It always amuses me when I read other Autism related blogs and articles, what we find ourselves dealing with on the run up to Christmas. For this family it was sleep deprivation at its finest! We are pretty used to lack of sleep and functioning on reserve energy but this was something else. Boy Wonder has developed this fear of never waking up. He has got it into his head that unless someone wakes him up he will stay asleep forever. (we can only dream!!!) To manage his fear he has decided that he needs to remain awake. So not only are we battling with the usual sleep difficulties, we are now up against a very determined ' I will stay awake' mentality.
Secondary to the sleep issues Boy Wonder has remained just as fearful of a strange man entering the house, being reported to Santa for being naughty (as Boy Wonder truly believes that he is a bad child, no matter how we reassure him.) and being forgotten. So all in all the build up has been a barrage of stress and anxiety. Cat Girl on the other hand has been very excitable as most children are and enjoying the fun of Christmas for what it really is. A difficult balancing act for us but a brief glimpse of a 'typical' child believing in and enjoying the spirit of Christmas is the perfect tonic at times when our heads are caving in!
Christmas Eve brought a very late night due to all of the above and so Christmas day started at a nice, respectable 8am. We went through the usual routine of walking around the house to make sure that nothing was in the house that shouldn't be and then we entered the lounge to find arranged presents around the tree. Cat Girl ripped through wrapping paper and giggled excitedly. Boy Wonder meticulously opened presents and placed them where they needed to be. Santa had got him a adoption certificate for Winter the dolphin from Dolphin Tale which he was fascinated by. 'I am actually being trusted to adopt Winter?!' We later announced that we are taking them to swim with dolphins in the summer and we thought he was going to burst!
We had a quiet dinner and then family came for tea, Boy Wonder became fixated on the time they were coming and paced the house for quite a while. Towards the end of the evening he started to get irritated and attempted to control what was going on around him. He had done well to last this long to be fair as the change in routine was huge and the whole day, no matter how well planned was at times unpredictable.
Boxing Day was an improvement on last years almighty low as Boy Wonder and Super man went to the football. This seemed to install some normality into the day and the fact that they won was a bonus. The snow fell in the evening and didn't stop which meant that a day sledging, tomorrow would be in order.
Saturday 27 December 2014
Monday 22 December 2014
Oliver, Oliver!!
As many parents
and carers of children with autism can relate, there is always a story to tell
about lack of services and substandard education provision. We too could tell
such a story and I guess it is because of this that our Son's achievements in musical
theatre make us so proud.
Four years ago Boy Wonder, aged five and newly diagnosed with autism and adhd embarked on a musical theatre class. We thought that this would be a good opportunity as he was forever singing and performing and has a phenomenal rote memory so was able to remember all the lines in a school play as well as his own. A good start we thought!
Being more than a little cautious I spoke with the staff at Chesterfield Studios about Boy Wonder's needs which included him being very literal and routine led, hyperactive with no fear of danger and adhoc seizure activity to name but a few quirks. This was received with open arms and we never looked back.
Boy Wonder’s confidence went from strength to strength. He took part in various performances and never batted an eyelid when faced with solo parts and big audiences.
We then looked to expand his skills and he started dance classes and piano with the Studios. In the first year Boy Wonder came out with distinctions in his ballet and tap exams and worked hard to get through the high anxiety he has about being picked on for being a boy and dancing. His achievements were remarkable especially as everything else seemed to be crashing down around our ears as far as his education was concerned. His anxieties were so high on a daily basis that his ability to function became more and more impaired which meant that the theatre and dance teaching could have quite easily collapsed too. However, they went with him and adjusted their teaching to suit his changing needs.
In June 2014 Boy Wonder auditioned for 'Oliver' with the Operatic Society and got the part of a work house boy and a member of Fagin's Gang. He was beyond excited and eager to start. The rehearsals commenced and he found out quickly that they were hard work and required a good attention span. However he showed great strength of character and pushed through his difficulties to make sure that he was doing it right. The main problems were the echoey and loud environment of the rehearsal studio, long rehearsals and repeating of parts of the show to ensure that the boys had it absolutely right. He asked many a question, needed clarification on phrases that he didn't understand and this was met with reassurance and a smile every time. We frantically searched for moulded ear plugs to help dull the noise. Once located the Company worked quickly to rush the order through and with these in place, Boy Wonder’s coping ability increased significantly. We spoke with his Doctors about how to manage his medications and although they were also juggling a lot of other health type issues with him, they worked with us to provide him with the support he needed to keep him fairly level. The excitement and eagerness to perform was enough to convince the clinicians that this was a great opportunity to increase Boy Wonder’s self esteem and confidence which was taking a battering in other areas of his life. The Studios staff supported the production with the Operatic Society so therefore Boy Wonder was around familiar adults who were used to getting the best of him.
The performance soon came around and before we knew it the opening night was upon us. On stage Boy Wonder put all that he had learnt into action. He and the boys excelled and thrived on the experience. The cast and stage management team as well as the staff were supportive and encouraging throughout which spurred them on more so. It was evident that Boy Wonder presented as a swan as on stage he was cool, calm and collected yet back stage he battled with his anxiety levels, social abilities in the dressing room and perception of failure if he got the tiniest thing wrong. On the opening night we were met with an unforeseen challenge as Fagin was made up with long grey hair an extended, crooked nose and a beard. I caught sight of the spectacular transformation first luckily and was able to prepare Boy Wonder for what he was about to see. Boy Wonder has a fear of old people! Especially ones with white / grey hair and wrinkled faces. The actor playing Fagin was very good and came down to the dressing room to assure Boy Wonder that it was only make up and not real. He inspected it closely before accepting this but in the end was happy that it was just pretend. As parents we chaperoned each of the six nights to ensure that we could keep him on track and this paid off. Not a meltdown in sight! Instead we had a very happy little boy at the end of it all who has not only learnt a lot about performing but has built some positive and long term relationships. Now he is eagerly awaiting his next opportunity and so are we as it is possibly the best therapy he could access. This couldn’t be achieved however with the hard work and dedication of the team of the Studios and Operatic Society.
Four years ago Boy Wonder, aged five and newly diagnosed with autism and adhd embarked on a musical theatre class. We thought that this would be a good opportunity as he was forever singing and performing and has a phenomenal rote memory so was able to remember all the lines in a school play as well as his own. A good start we thought!
Being more than a little cautious I spoke with the staff at Chesterfield Studios about Boy Wonder's needs which included him being very literal and routine led, hyperactive with no fear of danger and adhoc seizure activity to name but a few quirks. This was received with open arms and we never looked back.
Boy Wonder’s confidence went from strength to strength. He took part in various performances and never batted an eyelid when faced with solo parts and big audiences.
We then looked to expand his skills and he started dance classes and piano with the Studios. In the first year Boy Wonder came out with distinctions in his ballet and tap exams and worked hard to get through the high anxiety he has about being picked on for being a boy and dancing. His achievements were remarkable especially as everything else seemed to be crashing down around our ears as far as his education was concerned. His anxieties were so high on a daily basis that his ability to function became more and more impaired which meant that the theatre and dance teaching could have quite easily collapsed too. However, they went with him and adjusted their teaching to suit his changing needs.
In June 2014 Boy Wonder auditioned for 'Oliver' with the Operatic Society and got the part of a work house boy and a member of Fagin's Gang. He was beyond excited and eager to start. The rehearsals commenced and he found out quickly that they were hard work and required a good attention span. However he showed great strength of character and pushed through his difficulties to make sure that he was doing it right. The main problems were the echoey and loud environment of the rehearsal studio, long rehearsals and repeating of parts of the show to ensure that the boys had it absolutely right. He asked many a question, needed clarification on phrases that he didn't understand and this was met with reassurance and a smile every time. We frantically searched for moulded ear plugs to help dull the noise. Once located the Company worked quickly to rush the order through and with these in place, Boy Wonder’s coping ability increased significantly. We spoke with his Doctors about how to manage his medications and although they were also juggling a lot of other health type issues with him, they worked with us to provide him with the support he needed to keep him fairly level. The excitement and eagerness to perform was enough to convince the clinicians that this was a great opportunity to increase Boy Wonder’s self esteem and confidence which was taking a battering in other areas of his life. The Studios staff supported the production with the Operatic Society so therefore Boy Wonder was around familiar adults who were used to getting the best of him.
The performance soon came around and before we knew it the opening night was upon us. On stage Boy Wonder put all that he had learnt into action. He and the boys excelled and thrived on the experience. The cast and stage management team as well as the staff were supportive and encouraging throughout which spurred them on more so. It was evident that Boy Wonder presented as a swan as on stage he was cool, calm and collected yet back stage he battled with his anxiety levels, social abilities in the dressing room and perception of failure if he got the tiniest thing wrong. On the opening night we were met with an unforeseen challenge as Fagin was made up with long grey hair an extended, crooked nose and a beard. I caught sight of the spectacular transformation first luckily and was able to prepare Boy Wonder for what he was about to see. Boy Wonder has a fear of old people! Especially ones with white / grey hair and wrinkled faces. The actor playing Fagin was very good and came down to the dressing room to assure Boy Wonder that it was only make up and not real. He inspected it closely before accepting this but in the end was happy that it was just pretend. As parents we chaperoned each of the six nights to ensure that we could keep him on track and this paid off. Not a meltdown in sight! Instead we had a very happy little boy at the end of it all who has not only learnt a lot about performing but has built some positive and long term relationships. Now he is eagerly awaiting his next opportunity and so are we as it is possibly the best therapy he could access. This couldn’t be achieved however with the hard work and dedication of the team of the Studios and Operatic Society.
Turbulent Times
It has been with intention that the blog hasn't been updated due to the turbulent (yes more turbulent than usual!) nature of the past few weeks. There is much to update with the schooling situation and also with the Oliver performance so I will separate the two and cheat by posting the article that I have written for the National Autistic Society magazine on Oliver, in the next post.
Now that the Christmas holidays are under way we can sit back a little and reflect on the situation as it stands. Boy Wonder has struggled terribly with being at school and this has resulted in fixed term exclusions for hitting out, days and nights of crying due to the level of anxiety being so high that he just couldn't communicate it at any other level and aggression that has been irrational and uncontrolled. During the 'Oliver' performance Boy Wonder disclosed to the boys in his dressing room and then to us that he was going to run away from school the following day because he hated it so much. I talked to him at length about it but he kept repeating that last time he stopped but this time he would keep running. There was no consideration for the danger that he would put himself in and it concerned us greatly that this thought would be played out due to him being fixated by it. The following day, I disclosed the heightened risk to his school by writing it in his communication book and attempting to tell someone. Instead I was told to write it down a second time so ended up leaving the school without having communicated it at all, verbally. After an hour of no feedback I contacted the wider support network /LA by email and after a further hour received a brief contact from school acknowledging the information. An hour before school ended, I received a second phone call stating that Boy Wonder was fine and had been out at every play time with the usual supervision (which is minimal) and was fine. It was at this point that I hit the roof!
With the situation as it stood and the fact that Boy Wonder's complexities were clearly not understood or indeed respected, we made the decision to take him out of school until such a time that his safety could be understood and managed. This resulted in two weeks out of school with no argument from the LA and the Education Welfare Officer stating that there was no case to answer. We spent the time looking at other provisions, namely specialist schools that offer the full curriculum, home schooling through lots of walks in the country side, baking and tending to the animals and doing a great deal of work on anxiety levels and communication. The LA stepped it up by following through on a multi element plan, writing to the panel to increase statement hours and paving the way to a longer term plan.
In the final two weeks of term we agreed that Boy Wonder could return for three afternoons a week as long as full 1:1 supervision was agreed. This went ahead but the time in school was anxiety inducing and no real work was achieved, despite school's optimistic effort to try and cram a full term's work into six hours of per week. The Ed Psych visited the school to observe the situation and wrote a report which we are yet to see but he wants to discuss as soon as school starts back. Boy Wonder didn't attend the Christmas festivities for a variety of reasons, mainly lack of ability to cope and exhausted support at the end of their tether. Instead we opted for restarting the Art Therapy sessions at CAMHs and Boy Wonder enjoyed a lovely first session back where he opened up for the first time as well as announcing to the waiting room full of people that he Art Therapist looked different as his hair was grey! This caused few chuckles.
So the school holidays couldn't come quick enough and now that we are a few days in, Boy Wonder has started to settle. Although his cat has been run over and broke his leg, Boy Wonder is doing okay (once he got used the external fixator in his leg and shaved fur!). At the start of the new term we will start with a couple of hours schooling in the mornings and a meeting with the new head and ed psych to agree a way forward.
But for now we will focus on Christmas and let Boy Wonder, (especially now his lap top has been fixed by Uncle Geek and he has installed Mine Craft 'mods') enjoy his time out. Merry Christmas everyone.
Now that the Christmas holidays are under way we can sit back a little and reflect on the situation as it stands. Boy Wonder has struggled terribly with being at school and this has resulted in fixed term exclusions for hitting out, days and nights of crying due to the level of anxiety being so high that he just couldn't communicate it at any other level and aggression that has been irrational and uncontrolled. During the 'Oliver' performance Boy Wonder disclosed to the boys in his dressing room and then to us that he was going to run away from school the following day because he hated it so much. I talked to him at length about it but he kept repeating that last time he stopped but this time he would keep running. There was no consideration for the danger that he would put himself in and it concerned us greatly that this thought would be played out due to him being fixated by it. The following day, I disclosed the heightened risk to his school by writing it in his communication book and attempting to tell someone. Instead I was told to write it down a second time so ended up leaving the school without having communicated it at all, verbally. After an hour of no feedback I contacted the wider support network /LA by email and after a further hour received a brief contact from school acknowledging the information. An hour before school ended, I received a second phone call stating that Boy Wonder was fine and had been out at every play time with the usual supervision (which is minimal) and was fine. It was at this point that I hit the roof!
With the situation as it stood and the fact that Boy Wonder's complexities were clearly not understood or indeed respected, we made the decision to take him out of school until such a time that his safety could be understood and managed. This resulted in two weeks out of school with no argument from the LA and the Education Welfare Officer stating that there was no case to answer. We spent the time looking at other provisions, namely specialist schools that offer the full curriculum, home schooling through lots of walks in the country side, baking and tending to the animals and doing a great deal of work on anxiety levels and communication. The LA stepped it up by following through on a multi element plan, writing to the panel to increase statement hours and paving the way to a longer term plan.
In the final two weeks of term we agreed that Boy Wonder could return for three afternoons a week as long as full 1:1 supervision was agreed. This went ahead but the time in school was anxiety inducing and no real work was achieved, despite school's optimistic effort to try and cram a full term's work into six hours of per week. The Ed Psych visited the school to observe the situation and wrote a report which we are yet to see but he wants to discuss as soon as school starts back. Boy Wonder didn't attend the Christmas festivities for a variety of reasons, mainly lack of ability to cope and exhausted support at the end of their tether. Instead we opted for restarting the Art Therapy sessions at CAMHs and Boy Wonder enjoyed a lovely first session back where he opened up for the first time as well as announcing to the waiting room full of people that he Art Therapist looked different as his hair was grey! This caused few chuckles.
So the school holidays couldn't come quick enough and now that we are a few days in, Boy Wonder has started to settle. Although his cat has been run over and broke his leg, Boy Wonder is doing okay (once he got used the external fixator in his leg and shaved fur!). At the start of the new term we will start with a couple of hours schooling in the mornings and a meeting with the new head and ed psych to agree a way forward.
But for now we will focus on Christmas and let Boy Wonder, (especially now his lap top has been fixed by Uncle Geek and he has installed Mine Craft 'mods') enjoy his time out. Merry Christmas everyone.
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