Reviewing the Situation.......

On Friday afternoon we set off on a long weekend away together. The destination was a glamping ( posh camping) site set in the middle of a forest. The children were very excited even though we took no electronic devices with us at all ( except phones).  The journey took approximately two hours but when we arrived it was still hot and sunny and just about tea time.

The staff showed us around the amenities which consisted of a shop of sweets and other oddments  where you entered what you were taking into the honesty book, a communal campfire, pizza oven, rope swings, vintage caravan full of games and books, a vintage tea room and a rather quaint toilet/ shower block. The tents and woodcutter huts were spread out through the forest which meant that each setting was masked with trees and barely a glimpse of neighbouring sites. Ours was a woodcutters hut which housed a big comfy double bed and a sofa bed for the children which was also very comfy, a log burner and various tea light candle holders. The decking outside was shielded by a tent top and across the other side was a kitchen hut which housed all the necessaries. We also had our own picnic bench and BBQ with a collection of charcoal and wood to burn. Around the hut were trees and makeshift dens that other children must have built, providing Boy Wonder with the ideal surroundings to explore and 'look after' his little sister in the wilds!

We unpacked our things into the trunks provided and whilst Boy Wonder took Cat Girl off to explore ( being careful to lay a trail so that they wouldn't get lost!) Superman and I set about making tea from the BBQ. We then went out into the the communal area of the site and had a look around. Boy Wonder remained settled but preoccupied by the surroundings. He ran off to explore further ( it was all trees and not near any roads) but then went out of sight. We shouted him and split up to have a look for him but couldn't see him. I went over to the vintage caravan and he was sat in there engrossed in a building game, unaware of the mild panic that he had caused!

After an evening sat around the camp fire, talking to a couple of other people (they were few and far between), the children played on the rope swings and toasted marshmallows and Boy Wonder stoked the fire with close supervision; we then went off to settle down. With no electronic gadgets, the children read and within a reasonable timeframe Boy Wonder fell asleep. We put this down to not only having no access to gadgets but also because he had our company so wasn't anxious, with the affect of the outdoors!

The next couple of days consisted of on site bushcraft activities where they learnt to make stick men, shelters and make popcorn over the camp fire. Superman taught his Scout days tricks of the trade as in knots and making of tools. We played games in the forest and went on a two mile walk to go strawberry picking. Cat Girl loved the strawberries and ate most of them! Boy Wonder wasn't so sure as he didn't like the seeds. They both enjoyed picking them though. On the last night we made our own pizzas and tried out the pizza oven. This was a skill in itself as you had to light a fire in it and then push the embers to the back which should be sufficient enough to cook the pizza within a couple of minutes. Ours did cook but took a little longer than that. A bigger fire next time we think!

One of the main reasons for going on this holiday was that by taking him somewhere like this would allow him to settle and find himself again.  The place was lovely and very chilled without being boring but Boy Wonder really struggled once the adhd medication wore off.  As an example, he would go from a fairly relaxed state to an erratic and irrational state within minutes. We could set the clock by him.  He would sing loudly and shout a lot of the time, get too close to the fire, run off into the forest ( although we could hear him!), walk into other peoples accomodation insisting it was empty and okay to explore ( it wasn't !) and more worrying he would capture his sister in ropes with no awareness that this was not a safe thing to do especially when trying to wrap it round her neck.  

Historically we have found that his adhd symptoms escalated dependent on environmental stresses but the low arousal environment didn't reduce the escalation in his presentation at all.  This was really quite concerning but does support the fact that what the school have been experiencing is due to a deterioration in his adhd that is outside of his control and cannot be managed by the school rules that have previously suppressed him.  We made the decision to use his top up medication daily until he is reviewed by the Consultant again in a weeks time. The medication is set up for this type of use in the short term but is more of a as and when required dose. 

So the holiday did provide us with a break but also with an opportunity to 'review the situation' as they say!

The Last Day and into the Holidays!

The last two days of school were more settled due to the change in medication and the teacher trying to normalise the days as much as possible. Tuesday lunch time resulted a fisty cuffs over what Boy Wonder thought was an unfair footballing situation. This was started and finished by Boy Wonder in probably one of his most volatiles moments, luckily no one was hurt.

On Tuesday evening Boy Wonder attended a two hour Oliver rehearsal which he managed very well to say how tired and on the brink he is. Wednesday after school was the end of term disco and BBQ. We arrived a little later and I refrained from my usual helping out so that Boy Wonder could be more closely observed. We were also saying  final farewell to the head teacher which added to the emotion of it all! Boy Wonder spent the majority of his time trying to get away from one or the other of us and shouting at us to leave him alone if we got too close. This meant that we had to operate covertly to keep him in our glance. His play was boystrous and on the edge. He seemed to be unhappy most of the time but insistent on staying. When we did go to leave, Boy Wonder got very stressed and tried to bolt. I caught him and walked him outside where the head teacher was saying her goodbyes. When it was our turn he hugged her intensely which brought a tear to her eye. He then made us all hug her to say goodbye! He will certainly miss her as will Cat Girl who actually spoke to her whilst giving her a hug.

On Thursday we spent the morning around the house before going to the hospital to get Boy Wonder's blood tests done. He did very well and it didn't take long at all before we could leave. We arranged to meet cousins for lunch at the garden centre near to where they live. It was turning into a really hot day so sitting outside whilst the children made loom bands was lovely. After lunch we headed off home to pack for the holiday, a long weekend glamping.  Whilst packing, Boy Wonder played with the boy next door and two others. This didn't go too well as I had to tell them very early on about performing neck holds on each other when wrestling. They then persuaded Boy Wonder to stand on the pavement on the main road, selling loom band bracelets to passers by. At this point I brought Boy Wonder in which he wasn't at all pleased about. I explained the dangers of talking to strangers and standing near a busy main road. He didn't seem to register the problem initially but after  some explaining seemed to get a basic idea.

Cat Girl had her Ju Jitsu grading afterwards and did very well. Her confidence is really coming on. Towards the end Boy Wonder became restless and started to talk out loud in gibberish. I asked him a few times to be quiet but he wasn't retaining what I was saying long enough to put it into practice. This was a little odd as he would usually control himself around the Sensi as he knows the rules in Ju Jitsu.

Super man took Boy Wonder to football afterwards and said that he seemed to play well and settle into it, however he livened up again once home. Sleep was not great, Boy Wonder managing a few hours if that.

Friday, the day of the holiday brought a very excited Boy Wonder. He spent a few hours with his 1:1 worker as we weren't leaving until 3pm. They went to the cinema and for something to eat before coming back home. The worker said that he had been very excited whilst out and asked frequently if it was time to come home yet. When he did get home he went and sat himself in the car! We left to pick Superman up from work, singing 'Frozen' songs all the way, Cat Girl giggling every time it got to the snowman song.

Countdown.

Friday into the weekend proved to be a fairly volatile time for Boy Wonder. He yo-yo'd between hyper happy and agitated. Usually at the weekend we see some calm but not this weekend! I know a lot of parents are on count down to the school holidays but we REALLY are counting down as we can't wait for this torture to end so that we can get our child back. It is one of the hardest things that we do as parents of Boy Wonder, continuously sending him into the lions den. This is why we fight the system because the way special education stands for ASD kids on the whole just isn't good enough.

With two more days left at school, we start the process of chasing the proposed statement which as expected has been left to the last minute. In the brief conversation held, it was confirmed that it had been dispatched. I spoke with the head on collection from school who said that she will keep a look out for it. She also said that she had received a phone call from the local authority late on Friday asking for Boy Wonder's current support hours to be confirmed. She stated that he is receiving a minimum of 15 hours a week. This was met with a splutter. The heightened support need had been discussed in the previous multi disciplinary meeting but obviously not fed back!

The weekend was spent mainly at home, making Boy Wonder's tree house into a chill out area and by Superman making Cat Girl a play house of her own. ( He is very handy like that!) The storms of Saturday night provided some excitement and the Dolphin Tale film choice of Sunday evening made for a nice family movie time.

The Consultant responded to the medication query today to use Boy Wonder's top up medication earlier in the day to prevent his ADHD symptoms escalating. She agreed to this for the remaining two days of school which will take the edge off  at least.

This evening after football practice, Superman took Boy Wonder  to collect a new big boy's bike whilst I took Cat Girl for her swimming lesson. We then went to purchase some thank you gifts for the teachers before coming home to settle down.

It's not a Celebration!

Sunday night's Jungle Book performance was excellent although Boy Wonder appeared very agitated and aggressive before hand and particularly inattentive and hyper during the show. Towards the end he became vacant, his arms dropped and he stared into space for about ten seconds. He then came round and joined back in. Typically this wasn't the performance that was being filmed! The drama teacher reported that he was very difficult to manage back stage.

The school week started again and Boy Wonder immediately struggled, reported by teachers to be getting to lunch time and then becoming difficult to manage. This was exasibated further by the death of our elderly relative, relentless rehearsal for the school performance and the excitement of Superman's birthday.

Boy Wonder has always had an obsession/ irrational fear of death and we have historically managed it by explaining that old people do die and go to heaven. He accepts this to a degree but couldn't understand why the adults needed to be there and why a Doctor was being called if she was already dead. ( We had just left with the view to return that evening, leaving her with another relative.) Super Gran who was babysitting explained that it was to issue a death certificate. Boy Wonder clearly didn't understand this and stated that death wasn't a celebration so why did she want a certificate?!

The next morning Boy Wonder was very quiet and as soon as he got to school found the TA and hugged her and cried. The afternoon became very difficult to manage as Boy Wonder was clearly not in control of his emotions. This resulted in him having to be taken out of the school performance as he was shouting out, parroting and laying all over the stage. When I picked him up, he was climbing and attempting to jump off of the railings, throwing himself on the floor and baring his teeth and growling at the teacher when she was trying to support him. This resulted in her helping me to the car with Boy  Wonder and Cat Girl and voicing that she felt quite helpless.

Last night was the evening of the school show so we went home, made Superman a birthday cake and  then got ready to leave.  Boy Wonder was clearly agitated on arrival back at school but to be fair seemed to hold it together fairly well. However on leaving, he hit full throttle and took a long while to settle.

Today I spoke with the ADHD nurse about the difficulties at school due to the end of term turmoil. She was very informative, giving advice on increased time out and shorter days at school for the remaining time as well as other techniques that may help. She also offered to talk to the school directly which I agreed to readily. Hopefully this will help even a little bit.

Inspirational Lady

Apologies for the lack of 'blog' over the past week. As a family we are currently caring for one of our elder relatives who's health has deteriorated recently. I have a background in health care so it has been rather refreshing to use this experience again and give a bit of a hand to a very inspirational if not fiercely independent,  lady. It is these events that happen to shed light on what is important and remind us that it is the small things that make a difference, I.e being there and listening to and respecting others wishes.

Sat in this lady's home yesterday, I wrote a letter. To people that know her, they will know that many a letter has been written here, usually to make known her thoughts on certain matters! However she wasn't a moaner but more of a stickler for fairness and correct practice. My letter was to the Local Authority because last week we received a notification from the Tribunal that they had attempted to appeal the tribunal decision to order a statement, but this had been rejected.  We felt that this not only reinforced our point  that they don't get it, but more than that is the fact that the whole process has been brought about by their negligence and their practice, we believe is discriminatory. And after the letter had been drafted it felt like the right thing to do. We only get one shot at life so we need to make it count.

Thankfully, Boy Wonder has had a reasonable week. Apart from becoming very frustrated with play practice at school due to it turning the routine on its head, with additional movement breaks and time out he got through! We can also look forward to the return of some normality as the World Cup finishes tonight so no more late night matches.

Cat Girl went on her school trip this week which caused a great deal of excitement. She talked about it for days before and loved every minute of it, although she mainly spoke about the toilets! Unfortunately the next morning she was sick everywhere in true Cat Girl fashion which resulted in two days off school.

We received both school reports at the end of the week. Cat Girl's was excellent and a true reflection of how she is coming out of her shell. A really nice read as we do worry about the stuff she has to deal with sometimes and how this affects her. She's a tough little soul and makes us very proud.
Boy Wonder's report was also very good but appeared very generic and certainly not a true representation of him. I get that they like to give positive reports but I do think that they need to be realistic too. ' a happy and settled member of the class,' really?!

Last night Boy Wonder performed in the Jungle Book at his theatre group which was apparently very good. We are going to see it tonight and really looking forward to it. Will let you know how great if is in the next blog.

Lots of Exercise and Loom Bands

Friday brought the usual madness but with no real explosion at the end of the day. The activity afternoon at school seems to brighten Boy Wonder's spirits! Cat Girl was equally pleased as she got 10/10 in her spellings. Well done Cat Girl!!

Boy Wonder was late to settle, not helped by the football that is showing later and later! He reluctantly settled down just after midnight.  

The Festival of Sport was on the agenda for Saturday. Boy Wonder was in one of the eight football teams that played against each other for a cup. Boy Wonder played in defence and for one of the smallest on the pitch he was certainly feisty and defended the goal! Towards the end of the day he started to lose concentration so Superman had to prompt him more so. His team came 4th which was great and they all received a medal. 

Cat Girl and I had been shopping in the morning where she purchased a pink octopus called Olivia and a 'Frozen' book. This is all the craze as well as loom bands. We bought Boy Wonder a football encyclopaedia which he seemed to like. 

The later part of the evening was spent at home, making loom bands and watching the World Cup. This equalled another late night for Boy Wonder. 

This morning Superman took Cat Girl horse riding with Boy Wonder in tow. Boy Wonder took it upon himself to instruct Cat Girl on how to be more assertive with the horse! Neither Cat Girl or the horse listened. 

This afternoon Superman took Boy Wonder on a 14 mile bike ride with Boy Genius and his Dad. Although the ride was fairly vigorous and the bike obstacle course that they found caused a fair few cuts and bruises, Boy Wonder returned in an okay frame of mind. He had his dinner, a bath and went to bed to make loom bands. Cat Girl followed suit. 

Second Skin

The week so far has been madness on a stick! The new medication is not making any in roads so far and Boy Wonder's ability to stay in control is diminishing rapidly.

On Tuesday I had a meeting with his teacher after school to discuss the changing situation and if we felt that there was anything we could do in the short term to make things easier. We didn't come up with much but it was a nice chat and served as a 'bonding session' if little else. I then went to pick the children up from after school club and was met by disgruntled staff after Boy Wonder had kicked his foot through a Perspex window in the playhouse whilst playing Cops and Robbers. When I got there he looked as high as a kite. They explained that he had been told off, looked suitably ashamed and was made to sit down for twenty minutes. I attempted to explain that Boy Wonder knows the script of what to say when 'told off' but being in control of his impulses was an entirely different thing . He was clearly not in control at the point of collection. I apologised and offered to pay for the damage before we left. I later spoke to Boy Wonder who said that he realised it was wrong when he had done it but he was playing a game and hasn't thought about what he was doing.

Wednesday ended with a crash landing too. I picked him up from school with Cat Girl and was asked to come to the classroom to collect him. Boy Wonder was very high and his teacher was trying to reason with him to calm him. However, this bounced off of him and when I tried to get into his head, no luck either.   We left and got into the car which again was no easy task.

The school days are starting to form a pattern now of uncontrolled behaviour in the afternoons. We have been advised to use 'second skin' products by the O.T which are a tight fit breathable Lycra and shorts. This is to provide him with constant sensory feedback throughout the day and keep him calm. We also had a meeting today to discuss matters and were relieved to hear the teacher tell the meeting how difficult things are becoming and going into great detail about the typical school day, some of which we weren't aware of the extent. She described the level of parroting which is now loud and repetitive, the self chastising ' I'm a bad boy.' which again is repetitive and the high level of fidgeting and general movement during quiet times. We concluded that the statement will go to support his needs more intensely so would need to wait for the proposed document. The Ed Psych then took the opportunity to announce the end of his involvement at the meetings!

On collecting the children from school, Cat Girl didn't seem too well and was complaining of a number of aches and pains. We went to get Boy Wonder who was firmly planted on the classroom ceiling! The TA was attempting to contain him as he was trying to hand out water bottles to anyone and everyone. As I attempted to stop him he bolted out of the classroom, caught Cat Girl on the head and made her cry and then started to strip off his clothes! I consoled Cat Girl and quickly went to re dress Boy Wonder who by now was showing everyone his second skin and trying to remove it. We then fought our way to the car and I bundled him in. After Cat Girl got into the car, I checked her again and shut the door. The TA came past and we had a brief chat about what had just happened. She then calmly pointed out that I may have to fasten Boy Wonder back into his seat. I turned round to see his feet poking out of the boot where he had dived head first into it from the back seat! After saying goodbye and sorting out Boy Wonder, we went to dance.

The dance activity was okay behavioural wise. Cat Girl didn't go to Ju Jitsu as she didn't look too good so instead we nipped into town for some more loom bands and then sat waiting for Boy Wonder to finish. Afterwards he went to football training and on arrival home seemed to be a bit calmer! Hopefully he will sleep tonight, I know I will!