Cat Girl made an amazing recovery from the previous day, saying that she felt completely better! I now seem to have developed a sore throat and a bit of a cold but have Biker Gramps to thank for that! ;-)
Boy Wonder went off to his second adventure day after very little sleep but remained fairly well behaved and engaged. This was until the dreaded 3pm when the meds wore off and he reverted to Wild Child! They topped him up and sent him on the High wire course which he loves! A total adrenalin junky.
Cat Girl spent the day with Super Gran and Biker Gramps going to a toy museum which she loved.
After a busy day, Cat Girl and I picked Boy Wonder up and took him to his first Oliver rehearsal. Whilst waiting for him we went into a play centre and on coming out noticed that I had a flat tyre. We went to the garage across the road and pumped it up. It has stayed inflated so must be a very slow puncture that I have only just noticed!
Boy Wonder struggled to settle again in the evening which resulted in a very late night.
Today he went out with his 1:1 worker and they had a day of playing games - crazy golf, air hockey, bowling and pool. Boy Wonder appeared to have a great day. He seemed over stimulated / wide awake! After such little sleep I would expect him to be flagging by now.
His cousin came to play before tea time but as tea became ready Boy Wonder started to protest about eating so she had to leave. We don't like to make a fuss about his eating but when he puts the shutters down at the mere mention of food, it becomes concerning. He appears to be so skinny, more so than the average child of his age.
We are slowly approaching the end of the holidays and the tribunal date. This has become even more stressful because of the seizures and now we aren't sure if Boy Wonder can be supported safely at school until he has had more tests and seen his Consultant. Detailed observations are required and there is a concern over him causing himself an injury if he has a seizure that results in him dropping to the floor. He is also showing increased signs of agitation before a seizure and sleepiness afterwards. Therefore constant observation would be needed throughout the day.
Emails, appointments, reports and telephone consultations have again taken up the bulk of the 'holiday' which takes its toll on family time and even simple small talk opportunities have been sparse. Instead conversation is about worries, apprehension and simply exploring the possible outcomes and preparing for a longer battle than we initially thought.
However, it is what it is and we will give it our all to make sure Boy Wonder gets what he needs. The end result being a bit of normality and chill time to do ordinary stuff. Suddenly 'ordinary' seems very appealing!
Friday, 30 May 2014
Wednesday, 28 May 2014
More Vacant Episodes
The rain stopped play on Tuesday but plan B turned out to be just as fun. We had a lazy morning and then went off to the supermarket to get some ingredients for an afternoon baking session with Supergran and Biker Gramps.
We only went to the small supermarket as Boy Wonder can cope okay in there. It isn't usually busy and it doesn't echo like the bigger ones. When we arrived I sent him off on little errands to fetch items that we needed. He enjoys this as it keeps him occupied. We arrived at the checkout with a very full trolley and started to unload it. When it came to our turn he became fixated on the till and how much the shopping was costing. As it went over £100 he started to panic and needed to be reassured over and over that it was okay and we could afford it. I explained that it is usually a lot more expensive in the bigger supermarket and that this was actually quite cheap. He remained unconvinced.
We moved over to the packing bench where he and Cat Girl sat whilst I put the shopping into bags. During the packing I was stood very close to Boy Wonder and noticed that he had three vacant episodes lasting approximately 5 seconds, one after the other. In between them I asked him if he was okay and he appeared confused. He stared into space during the episodes. There wasn't any twitching or other signs to note. Afterwards we went back to the car and he seemed to be very quiet.
Throughout the afternoon we baked with Supergran. Biker Gramps did some painting and drawing with Cat Girl. She chose to paint a snowman picture! Boy Wonder was oddly compliant throughout the afternoon and very quiet. Eventually I allowed him to go and rest in his room and after a couple of hours of this ( and several checks on him) he seemed to liven up again.
Today Boy Wonder and his friend went to an outdoor activity centre where they did archery, climbing and canoeing. The staff said that Boy Wonder appeared fine throughout the day with no obvious seizure activity although it was obvious when his medication wore off and he needed a top up! She also commented on the boys relationship and how they got on really well but fell out quite a bit. However, as she intervened to try and help them through their misunderstandings, they would appear to just forget about the problem and be best buddies again! I think she found this quite fascinating!
I spoke with Boy Wonder's Consultant again today to update her on the vacant episodes. She said that she had already re requested an urgent EEG after getting my message this morning and said that she would call school directly to ensure that he is monitored sufficiently. She reiterated that any concerning episodes or difficulties and Boy Wonder should be taken to A+E to be monitored. I later emailed the Consultant Psychiatrist to update her on the episodes.
Once home Boy Wonder played on his computer and Cat Girl settled down early. We had been out for the afternoon whilst BoyWonder was out and she had been sick. She then complained of being hot and then cold and having earache. Hopefully she will feel brighter in the morning.
We only went to the small supermarket as Boy Wonder can cope okay in there. It isn't usually busy and it doesn't echo like the bigger ones. When we arrived I sent him off on little errands to fetch items that we needed. He enjoys this as it keeps him occupied. We arrived at the checkout with a very full trolley and started to unload it. When it came to our turn he became fixated on the till and how much the shopping was costing. As it went over £100 he started to panic and needed to be reassured over and over that it was okay and we could afford it. I explained that it is usually a lot more expensive in the bigger supermarket and that this was actually quite cheap. He remained unconvinced.
We moved over to the packing bench where he and Cat Girl sat whilst I put the shopping into bags. During the packing I was stood very close to Boy Wonder and noticed that he had three vacant episodes lasting approximately 5 seconds, one after the other. In between them I asked him if he was okay and he appeared confused. He stared into space during the episodes. There wasn't any twitching or other signs to note. Afterwards we went back to the car and he seemed to be very quiet.
Throughout the afternoon we baked with Supergran. Biker Gramps did some painting and drawing with Cat Girl. She chose to paint a snowman picture! Boy Wonder was oddly compliant throughout the afternoon and very quiet. Eventually I allowed him to go and rest in his room and after a couple of hours of this ( and several checks on him) he seemed to liven up again.
Today Boy Wonder and his friend went to an outdoor activity centre where they did archery, climbing and canoeing. The staff said that Boy Wonder appeared fine throughout the day with no obvious seizure activity although it was obvious when his medication wore off and he needed a top up! She also commented on the boys relationship and how they got on really well but fell out quite a bit. However, as she intervened to try and help them through their misunderstandings, they would appear to just forget about the problem and be best buddies again! I think she found this quite fascinating!
I spoke with Boy Wonder's Consultant again today to update her on the vacant episodes. She said that she had already re requested an urgent EEG after getting my message this morning and said that she would call school directly to ensure that he is monitored sufficiently. She reiterated that any concerning episodes or difficulties and Boy Wonder should be taken to A+E to be monitored. I later emailed the Consultant Psychiatrist to update her on the episodes.
Once home Boy Wonder played on his computer and Cat Girl settled down early. We had been out for the afternoon whilst BoyWonder was out and she had been sick. She then complained of being hot and then cold and having earache. Hopefully she will feel brighter in the morning.
Monday, 26 May 2014
Singing and the Rain!
Boy Wonder had a relaxing Sunday morning at home with Superman whilst I took Cat Girl horse riding and then to a party. When we arrived back we all went out to meet friends at a local event where there was a climbing wall and lots of outdoor activities. Cat Girl was too small for the climbing wall but Boy Wonder and his friend Boy Genius were harnessed up and climbed it quickly with minimal effort. They had their photos taken to be used for advertising.
After a couple of hours we went to our friends for tea and the children played. Boy Wonder and Boy Genius composed some songs and with music from the keyboard and performed them for us. They wrote a song which went ' You can do anything you want, if you believe. You can climb the highest mountain as long as you believe.' The other was about school https://m.facebook.com/story.php?story_fbid=680821085288912&id=559661697404852 which I wrote about on the page. It was fabulous to see them both so animated and exposed a fleeting glimpse inside their heads.
Bank holiday Monday brought the usual rain. We headed down to London to see Grandad London and Jenny Wren. The journey down was good and we arrived just before lunch. Boy Wonder introduced Grandad London to his favourite game, Labyrinth and promptly thrashed him! After lunch we went to the park with a football and Cat Girl's pushchair and baby dolls. It was a little drizzly on the way to the park but they managed to have a kick around and a play. The zip wire was quite possibly the highlight and jumping off of the climbing frame and being caught by Grandad! As the clock struck 4pm, Boy Wonder accelarated into hyper/ stressy mode. You can set your watch by him! I gave him his top up medication to try and settle him.
The heavens opened and we got very wet on the way back to the house. Boy Wonder insisted on kicking his ball back through the park and after a display of nifty footwork by Superman, kicking the ball over the stream, Boy Wonder attempted to copy. Oh dear! The ball went into the stream where it was quickly rescued by Superman who flicked it out and it promptly landed in the still water on the other side! It was at this point that Boy Wonder declared that it was his best football and that he wouldn't be leaving without it! After numerous attempts of trying to reach it with sticks, throwing stones at it to get it to float closer, it ended up in the reeds. There was nothing else we could do other than go for a paddle so in I went with a stick as my aid. My feet sunk a good six inches into the silt which meant that my rolling up of the jeans proved inadequate. However, the ball was retrieved and Boy Wonder was happy again! We carried on our journey in torrential rain by this point. Everyone now complimented my saturated state. As Grandad London predicted, the rain stopped just as we arrived back.
We dried off and had tea before starting our journey home. Again the journey was fairly trouble free except for the relentless rain.
After a couple of hours we went to our friends for tea and the children played. Boy Wonder and Boy Genius composed some songs and with music from the keyboard and performed them for us. They wrote a song which went ' You can do anything you want, if you believe. You can climb the highest mountain as long as you believe.' The other was about school https://m.facebook.com/story.php?story_fbid=680821085288912&id=559661697404852 which I wrote about on the page. It was fabulous to see them both so animated and exposed a fleeting glimpse inside their heads.
Bank holiday Monday brought the usual rain. We headed down to London to see Grandad London and Jenny Wren. The journey down was good and we arrived just before lunch. Boy Wonder introduced Grandad London to his favourite game, Labyrinth and promptly thrashed him! After lunch we went to the park with a football and Cat Girl's pushchair and baby dolls. It was a little drizzly on the way to the park but they managed to have a kick around and a play. The zip wire was quite possibly the highlight and jumping off of the climbing frame and being caught by Grandad! As the clock struck 4pm, Boy Wonder accelarated into hyper/ stressy mode. You can set your watch by him! I gave him his top up medication to try and settle him.
The heavens opened and we got very wet on the way back to the house. Boy Wonder insisted on kicking his ball back through the park and after a display of nifty footwork by Superman, kicking the ball over the stream, Boy Wonder attempted to copy. Oh dear! The ball went into the stream where it was quickly rescued by Superman who flicked it out and it promptly landed in the still water on the other side! It was at this point that Boy Wonder declared that it was his best football and that he wouldn't be leaving without it! After numerous attempts of trying to reach it with sticks, throwing stones at it to get it to float closer, it ended up in the reeds. There was nothing else we could do other than go for a paddle so in I went with a stick as my aid. My feet sunk a good six inches into the silt which meant that my rolling up of the jeans proved inadequate. However, the ball was retrieved and Boy Wonder was happy again! We carried on our journey in torrential rain by this point. Everyone now complimented my saturated state. As Grandad London predicted, the rain stopped just as we arrived back.
We dried off and had tea before starting our journey home. Again the journey was fairly trouble free except for the relentless rain.
Sunday, 25 May 2014
But He Isn't Glowing?!
Thursday brought one crazy day. Any thought of calm after the dance show was well and truly misguided! However this wasn't initially down to Boy Wonder's temperament but due to several changes made to his school day that he hadn't been prepared for. This consisted of two supply teachers, 1:1 talk time being moved to the afternoon, class photos, not being allowed out at playtime with the others and having to wait to go out later with a small group ( to stop bad behaviour), were amongst the changes. Due to the change in teacher, Boy Wonder's heightened state was poorly managed resulting in him being sent out of class assembly and moved right down on the behaviour chart. The end result being that he hurt another child ' for no apparent reason,' and was in a very high state of arousal at home time.
Later in the evening was the school disco and we were not convinced that Boy Wonder should go. He also agreed but when it came to Cat Girl leaving with me to go, he became upset and said he wanted to go. Superman brought him down a bit later but he struggled throughout due to him already being pushed up to the max. This resulted in him ingesting the contents of a glo stick and spending three hours in hospital, being checked over for potential poisoning. Luckily he just had tummy ache from the ingestion but whilst waiting he had a vacant episode for approximately ten seconds. This got noted and I was asked to inform his Doctor the next day.
We arrived home late and managed to get a little sleep before the next school day. Cat Girl woke and was most disappointed that Boy Wonder wasn't glowing! Boy Wonder didn't understand what she meant and became a bit frustrated. I explained that it was a joke.
The school day we believe was fairly quiet but can't be sure as we didn't have his diary in his bag. Boy Wonder's first words on collection were ' one week and one day off now!' That was what kept him going all day then?!
I spoke with the Doctor who expressed concerns over the seizure activity and explained that a whole manner of things can lower a seizure threshold, including illness, anxiety, swallowing chemicals maybe! She asked for observations to continue but to include Chiari Malformation specifics too and she would book an EEG to formulate some baseline observations.
Saturday brought a calmer Boy Wonder and we enjoyed an afternoon out together with little anxiety. We went to a play centre and then out for dinner. It brought some much needed family time after what seemed like a bonkers week!
Wednesday, 21 May 2014
Where's my lipstick?!
After a weekend of volatile behaviour from Boy Wonder, he managed to sleep for twelve hours solid through to the next morning which is unheard of. We got up and ready for school, Boy Wonder still being stressy but high with it.
Biker Gramps picked Boy Wonder up from school for Art therapy. On the way he said that he was chatting away as normal but mid sentence stopped and slumped in his car seat looking like he had fallen to sleep. On checking him, he roused but said he was tired and went to sleep for the rest of the journey. It seemed very odd as Boy Wonder struggles to sleep at the best of times, he had had a twelve hour sleep the night before, he stopped mid sentence and his aggression over the weekend had heightened. This seemed to point to a seizure but we couldn't be
100% sure. It would be a shame if it was though as he hasn't had one for well over a year.
Monday night was the first of the dance shows and it went very well. Cat Girl came to watch with us and really enjoyed it until she got tired towards the end! Boy Wonder sang nice and loudly, danced well and even smiled! When we picked him up at the end he was very happy. Once home he settled quite well.
Tuesday brought a slight change in routine as Superman and I were visiting a school with a specialism in autism. We dropped the children off at breakfast club and left them with a note to give Boy Wonder's teacher about Monday afternoon's episode. In the note it asked them to be aware and report any changes.
After the school visit that went well and gave us more of an idea about what is available, we suddenly realised that Boy Wonder hadn't had his ADHD medication. It was 10.45am. I rang the school and told them and was told that he was very hyper by the receptionist! I arrived and gave him his tablet and he was indeed climbing the walls, using his baby voice, bouncing about and shouting. I explained that the medication should take effect in about an hour. It was of great concern that they hadn't rung to inform us of his change in presentation, especially as it was so obviously different. I spoke to the school about this the following morning and was told that they didn't think they needed to ring as he was manageable. They had increased movement breaks and he had to be moved to his 'quiet' table where he drew his cat, but this was managing. I asked if they would have 'managed' all day if we hadn't realised and was told 'yes, probably.'
I spoke with Boy Wonder's Doctor about the episode and she explained that she wanted some specific things monitoring and would review him at his next appointment which would be brought forward. She said that she would put her requirements in a letter to support with consistency of the observations.
The last two nights of the dance show went very well and Boy Wonder was sad that it was ending. He made a good friend with a slightly older boy and this seems to have really helped him to get past being worried about what other people think about him dancing. So much so he was demanding hairspray, blusher and lipstick before he left home for the last show!
Now to prepare for 'Oliver' in November. We need to think a bit more about his adhd medication before then as by the time it gets to 9pm, it is out of his system. This was fairly noticeable during the dance show but will be more difficult to 'hide' in music theatre. We have a bit of time to work it out though!
Thank you to everyone that came to watch!!
Biker Gramps picked Boy Wonder up from school for Art therapy. On the way he said that he was chatting away as normal but mid sentence stopped and slumped in his car seat looking like he had fallen to sleep. On checking him, he roused but said he was tired and went to sleep for the rest of the journey. It seemed very odd as Boy Wonder struggles to sleep at the best of times, he had had a twelve hour sleep the night before, he stopped mid sentence and his aggression over the weekend had heightened. This seemed to point to a seizure but we couldn't be
100% sure. It would be a shame if it was though as he hasn't had one for well over a year.
Monday night was the first of the dance shows and it went very well. Cat Girl came to watch with us and really enjoyed it until she got tired towards the end! Boy Wonder sang nice and loudly, danced well and even smiled! When we picked him up at the end he was very happy. Once home he settled quite well.
Tuesday brought a slight change in routine as Superman and I were visiting a school with a specialism in autism. We dropped the children off at breakfast club and left them with a note to give Boy Wonder's teacher about Monday afternoon's episode. In the note it asked them to be aware and report any changes.
After the school visit that went well and gave us more of an idea about what is available, we suddenly realised that Boy Wonder hadn't had his ADHD medication. It was 10.45am. I rang the school and told them and was told that he was very hyper by the receptionist! I arrived and gave him his tablet and he was indeed climbing the walls, using his baby voice, bouncing about and shouting. I explained that the medication should take effect in about an hour. It was of great concern that they hadn't rung to inform us of his change in presentation, especially as it was so obviously different. I spoke to the school about this the following morning and was told that they didn't think they needed to ring as he was manageable. They had increased movement breaks and he had to be moved to his 'quiet' table where he drew his cat, but this was managing. I asked if they would have 'managed' all day if we hadn't realised and was told 'yes, probably.'
I spoke with Boy Wonder's Doctor about the episode and she explained that she wanted some specific things monitoring and would review him at his next appointment which would be brought forward. She said that she would put her requirements in a letter to support with consistency of the observations.
The last two nights of the dance show went very well and Boy Wonder was sad that it was ending. He made a good friend with a slightly older boy and this seems to have really helped him to get past being worried about what other people think about him dancing. So much so he was demanding hairspray, blusher and lipstick before he left home for the last show!
Now to prepare for 'Oliver' in November. We need to think a bit more about his adhd medication before then as by the time it gets to 9pm, it is out of his system. This was fairly noticeable during the dance show but will be more difficult to 'hide' in music theatre. We have a bit of time to work it out though!
Thank you to everyone that came to watch!!
Sunday, 18 May 2014
Rehearsals
Friday morning saw an ultimate low from Boy Wonder. There appeared to be no particular reason for it except maybe exhaustion! We got ready for school, Cat Girl being very excited as it was the last day before the weekend and we had promised her the paddling pool out!
Boy Wonder slumped into school and completely ignored the other children who spoke to him. He remained quiet for most of the day but seemed to pick up later at home when his cousin came over.
The weekend was fairly busy with dance show rehearsals both Saturday and Sunday which Boy Wonder coped well with. However, Saturday afternoon and evening, he became quite agitated and verbally aggressive. Boy Wonder was not holding it together too well at all which resulted in a massive show down before bed! He eventually fell to sleep at 10pm but was up and about again from 3.30am.
On Sunday after a very good rehearsal, Boy Wonder immediately became hyper. However when supported to settle he became agitated. The afternoon was a combination of shouting, hitting himself and others and generally not coping too well at all. The ice cream van came and Boy Wonder ran to it bare foot, demanded a bubble him lolly to which I said no due to the ridiculous amount of food colouring on it, and then shouted in the street about how unfair everything was.
After running some energy off outside with the boy next door and playing in the paddling pool. ( It was very warm !) he and Cat Girl came in and had a bath, one after the other . Two sets of grandparents had been over for the afternoon to help move the chicken shed, he had engaged little at times except for an over exaggerated welcome when he returned from the rehearsal. Just after 8pm Boy Wonder got into bed and with his weighted blanket on was asleep within half an hour.
Boy Wonder slumped into school and completely ignored the other children who spoke to him. He remained quiet for most of the day but seemed to pick up later at home when his cousin came over.
The weekend was fairly busy with dance show rehearsals both Saturday and Sunday which Boy Wonder coped well with. However, Saturday afternoon and evening, he became quite agitated and verbally aggressive. Boy Wonder was not holding it together too well at all which resulted in a massive show down before bed! He eventually fell to sleep at 10pm but was up and about again from 3.30am.
On Sunday after a very good rehearsal, Boy Wonder immediately became hyper. However when supported to settle he became agitated. The afternoon was a combination of shouting, hitting himself and others and generally not coping too well at all. The ice cream van came and Boy Wonder ran to it bare foot, demanded a bubble him lolly to which I said no due to the ridiculous amount of food colouring on it, and then shouted in the street about how unfair everything was.
After running some energy off outside with the boy next door and playing in the paddling pool. ( It was very warm !) he and Cat Girl came in and had a bath, one after the other . Two sets of grandparents had been over for the afternoon to help move the chicken shed, he had engaged little at times except for an over exaggerated welcome when he returned from the rehearsal. Just after 8pm Boy Wonder got into bed and with his weighted blanket on was asleep within half an hour.
Thursday, 15 May 2014
Full Moon
Yesterday and today have been quite similar in that Boy Wonder had been very hyper and loud! The interesting thing is though that he isn't concealing it at all and at the beginning and end of the day ( when the medication isn't active) and so school are seeing him at full throttle.
When I picked the children up yesterday, Boy Wonder immediately jumped at me, used his baby voice and spoke in third person. His teacher attempted to calm him but to no avail. He ran off to collect Cat Girl but her teacher wouldn't let her out with him. When I got there she told me that she had told Boy Wonder in the nicest possible way that he is too young to collect his sister. Really though she was concerned about his hyper state. Getting them to the car was a piece of work in itself. Boy Wonder was jumping about all over the place and was becoming angry at me restricting him.
Eventually we got into the car and went to clubs. I gave Boy Wonder his medication and this appeared to level him off a bit. They enjoyed drama and ju Jitsu, Boy Wonder told me that he had been a good boy because the teacher said! They do use his energy constructively at drama!
Today was much the same mood wise, as stated. The TA asked if the weather may effect his mood? Maybe, either that or the full moon. It is often spoken about how a full moon can contribute to mood. Maybe I should investigate further!
We went to visit a new school today which has an autism provision. It was a nice enough place but a typical example of the local authority making do. The staff however did seem knowledgable and were able to give us some pointers.
Boy Wonder went to dance in his hyper state ( even with his tea time medication) and his dance teacher smiled and said that he had been lively and good luck. She just takes it in her stride which is great.
Grandad took him to football this evening as I had to nip out for a meeting. Superman said that when he returned he said that Boy Wonder could do with concentrating more but played well at times. Superman reminded him that concentration wasn't really a strength that Boy Wonder had much of and laughed.
They both settled down for bed but Boy Wonder remained awake till quite late, singing at the top of his voice to his music!
When I picked the children up yesterday, Boy Wonder immediately jumped at me, used his baby voice and spoke in third person. His teacher attempted to calm him but to no avail. He ran off to collect Cat Girl but her teacher wouldn't let her out with him. When I got there she told me that she had told Boy Wonder in the nicest possible way that he is too young to collect his sister. Really though she was concerned about his hyper state. Getting them to the car was a piece of work in itself. Boy Wonder was jumping about all over the place and was becoming angry at me restricting him.
Eventually we got into the car and went to clubs. I gave Boy Wonder his medication and this appeared to level him off a bit. They enjoyed drama and ju Jitsu, Boy Wonder told me that he had been a good boy because the teacher said! They do use his energy constructively at drama!
Today was much the same mood wise, as stated. The TA asked if the weather may effect his mood? Maybe, either that or the full moon. It is often spoken about how a full moon can contribute to mood. Maybe I should investigate further!
We went to visit a new school today which has an autism provision. It was a nice enough place but a typical example of the local authority making do. The staff however did seem knowledgable and were able to give us some pointers.
Boy Wonder went to dance in his hyper state ( even with his tea time medication) and his dance teacher smiled and said that he had been lively and good luck. She just takes it in her stride which is great.
Grandad took him to football this evening as I had to nip out for a meeting. Superman said that when he returned he said that Boy Wonder could do with concentrating more but played well at times. Superman reminded him that concentration wasn't really a strength that Boy Wonder had much of and laughed.
They both settled down for bed but Boy Wonder remained awake till quite late, singing at the top of his voice to his music!
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