Saturday, 27 December 2014

Sleep Deprivation - Santa!

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.

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.   

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.

Sunday, 16 November 2014

Catching up

Its been two long weeks since the return to school.  A mixture of upset, anxiety and sheer frustration seemed to be the order of the day (every day!) and little sign of anything improving.  After three days of crying and banging on windows and doors to try and get out once I had dropped him off in the mornings, Boy Wonder lost all motivation to go to school and on Thursday, point blank refused.  I attempted to coax him but my heart wasn't in it and so therefore we had a chill day at home and spoke no more about it.  Later in the afternoon Boy Wonder was visited by an audio technician who fitted him for some noise filtering ear plugs, these are to help him to cope with noisier environments. A few phone calls also took place throughout the day and basically concluded that Boy Wonder should take time out as he needs and steps should be taken to source a more suitable and equipped provision.  The Ed Psych stepped up his position and made in roads to securing the pathway for this and outlining the provision required for it to take place.  We made arrangements to have Boy Wonder cared for on the Friday but after an evening with the boy next door, he decided to go as he had been invited onto the special dinner table with him.  This day turned out like the others.

The weekend mainly consisted of football, dance and rehearsals.   Boy Wonder was less stressed and enjoyed his weekend, until it reached Sunday tea time and the anxiety rose in him and he became very vocal that he didn't want to go to school.  We spoke to him about looking at another school where one of his theatre friend's goes.  We described what it was like and the specialist areas for children with autism and for the first time Boy Wonder acknowledged the positives and said that he wanted to visit.

The second week was a little more settled, Boy Wonder's work station had been moved into the I.T room and provision was made to keep him in there full time and not attempt any integration into the classroom.  This had caused a fair few difficulties in the previous week.  On Wednesday evening during drama, Boy Wonder  went very pale and blinked continuously for at least thirty seconds.  The staff thought he had had a seizure so sat him out once his colour drained.  He recovered after a few minutes and remembered nothing of it except that he could feel an eyelash in his eye.  On Thursday he went to school and I informed them of the previous evening.  At 10.30am they rang to say that Boy Wonder had gone very pale and had diarrhoea.  We arranged for Grandparents to collect him,  thinking that it was anxiety related as opposed to the virus that was going around.    He spent the afternoon resting with no further symptoms, therefore he went to dance and football as normal.

And then it all got a bit messy.  In the middle of the night Boy Wonder was very sick indeed.  This carried on throughout Friday and knocked him off of his feet.  No further seizures noticed but he was possibly ill for the first time in a long time, albeit a virus that would pass in a couple of days.  The visit to the potential new school had to be postponed due to him being ill but I managed to have a meeting with his current teacher who said that she felt that Boy Wonder now needed more than they could give and supported the potential move.

Luckily everyone else escaped the virus except for me but by the end of the weekend we were all back to normal. Boy Wonder's ear plugs arrived on the Friday and he tried them out at rehearsals today.  They seemed to really help him cope with the noise levels.  Early days but we are hopeful that they will make a difference.

Sunday, 2 November 2014

School Holidays

As is generally the case, Boy Wonder settled nicely into holiday mode and his mood lifted.  We intentionally kept the weekend low key with the usual football and dance on Saturday and staying at home on Sunday.   On Sunday afternoon I gave Boy Wonder the fresh cream chocolate cake recipe and he and Cat Girl made the cake from start to finish on their own with just a little help to put it n and take it out of the oven.  The cake was for Super Gran's birthday so they also made some mini fresh cream chocolate sponges for us.  They were very nice.

On Monday we went to the supermarket in the morning and brought a few bits plus a pumpkin to carve for Halloween.  Boy Wonder coped well as it was only a small supermarket and he got to talk to the British Legion chap selling poppies whilst I packed the shopping.  He and Cat Girl bought a poppy snap band each and Boy Wonder asked lots and lots of questions about the war, being in the army and death (of course.)  The man asked him if he would like to be in the forces and he said 'No, I am going to be a Marine Biologist and look after Dolphins.'  They then had a lengthily conversation about this.  Once home and shopping unpacked, we picked up the cake and headed off to Super Gran's for her birthday lunch. Boy Wonder helped to make lunch, mainly to distract him from bear hugging his sister and bouncing around.  They are now in their new house and he is still getting used to it.  A friend arrived unannounced to deliver a birthday present to Super Gran and this sent him into a mild panic. 'Who is he? Why is he here? Can't we have lunch now?' After reassurance and a firm hold hug he settled again.

The rest of the week Boy Wonder and Cat Girl went to the Ju Jitsu holiday club which wore them both out and Boy Wonder went to two adventure days and to Club Inspire. Cat Girl spent some time with Grandads having chill days.

Boy Wonder remained fairly settled throughout the week and on Friday they both went to Halloween parties and Trick or Treating.  Boy Wonder dressed up as a vampire and Cat Girl as a skeleton.  They both ended up with a bucket of sweets each that they promptly hid from me!

It was my birthday on Saturday and so both children were up early to give cuddles, cards and pressies.  These were a heart shaped locket with their photos inside and a photo frame from Cat Girl with her photo in it. I even got breakfast in bed which consisted of a  marmite on toast, a cupcake and and beaker of pop.  The remainder of the weekend consisted of football and dance for Boy Wonder as usual and Grandad took him to watch his team play football.  Super Gran and Biker Gramps babysat Saturday afternoon to Sunday morning as Superman had arranged to take me away overnight for my birthday and a meet up with some family.  

We had a lovely time away and the children enjoyed their time with  Super Gran and Biker Gramps.  Once home we spent the day around the house and had visits from family and friends to bring birthday cards.

As the day wore on Boy Wonder started to become tetchy and very vocal about not wanting to go to school.  We had a chat about it and although we are still non the wiser what was agreed after our meeting last Friday, attempted to reassure him that they were trying to help him.  Boy Wonder seemed just as convinced as we are that things will improve soon.  (which isn't very convinced!) but we agreed to give it a go and that I wouldn't be far away if he needed me.

A late and unsettled night ..........

Monday, 27 October 2014

Decisions .......

The last week in school has been hard work to say the least. Boy Wonder made it very clear that he didn't want to be there and made it very difficult for me to leave him, averaging half an hour of negotiations each day just to stop him running out of the door.

Although Boy Wonder managed a full week without exclusion, it was by the skin of his teeth. There were many a challenge faced with refusal, defiance and aggression and although these are clearly surface level descriptions of the real anxiety difficulties , this appeared to be the mindset of the exhausted support circle.

Collecting from school became equally as complicated as it became impossible to make a quick exit due to Boy Wonder running wild, without shoes around the classroom and even the school. Classroom semi trashed, items thrown and tables used as a race track were some of the displays of manic behaviour, resulting in meltdown each time. After an hour of leaving school however, Boy Wonder calmed and regained composure.

To say that I feel physically exhausted would be an understatement. Just getting to and from school each day proved to be a strenuous workout. Cat Girl, however became more and more emotional due to witnessing the torment that Boy Wonder was going through and his outbursts of anger. We had a good talk about why Boy Wonder is like he is and that nothing he says or does is personal. The bear hugs are the biggest problem as he is a very strong little boy and although he is doing it for sensory feedback rather than anger, being squeezed within an inch of your life is not pleasant!

On Thursday Boy Wonder had his follow up appointment with the Consultant. He has put on 4kg in a month and grown 1cm. As he is also sleeping better, eating well and is generally more settled at home without the anger explosions, she decided that the positives of being off of the medication at present outweighed the negatives.   Therefore no medication has been added and he is being reviewed again in the New Year. We are in full agreement with this as school aside, he is coping remarkably well with strategies alone.

We had a visit to a school with an autism unit on Friday morning which was initially just a 'going through the motions' exercise as there is no space. However, the Head certainly knew his stuff, the resource area was just what he needs and it is as inclusive or as segregated as it needs to be for the child. There are also children at the school who Boy Wonder knows through his drama group so a ready made friendship circle. Although there is still no space, Boy Wonder could access the school through mainstream provision and make full use of the facilities. A strong contender!

In the afternoon we had a lengthly meeting at school to discuss the Multi Element Plan which unpicks 'behaviour' and reactions to the school day. Although we have not previously seen eye to eye with the ed psych, he did talk a lot of sense and did a very good job of identifying the triggers and hot spots. Obviously it wasn't anything that we hadn't already identified but for once the words were spoken by the local authority and we just nodded in agreement.  The meeting concluded with a decision to remove all pressure from Boy Wonder and opt for a1:1 out of the classroom approach to try and build bridges and improve his negative thoughts about the school day. We left them to discuss the finer points of this, the main one being space to do it.

We collected the children from school and had a fairly settled exit and evening. The last day before the holidays effect should be bottled!

Sunday, 26 October 2014

Birthday Boy!

Last Friday after school brought Boy Wonder's go karting party. He and eight friends took to the track at an indoor karting centre. The staff were excellent and removed the lap times and positions screen so that they could just have fun without the upset and pressure of competition. Boy Wonder really struggles with this and combined with two other children with ASD the emphasis needed to be firmly on fun rather than meltdown!

A friend made a wonderful Minecraft cake for Boy Wonder and they had pizza for party food. All in all they all seemed to have great fun and it was nice to see Boy Wonder have a positive experience with his friends.

Saturday was the big day and this started at 6.45am when Boy Wonder opened his eyes. After his shower and changing into his football kit ( early match) he came into our room for present opening. Cat Girl bought him a beautiful carved wooden dolphin which he loved. He also had some Lionel Messi football boots, a season ticket for his favourite football club, biking gear and games for his XBox. He seemed very happy and once everything was open he had breakfast and bounded off to football with Superman, insisting on wearing his new boots.

After lunch Boy Wonder went to dance and then on to watch his favourite team play football with Superman. Cat Girl and I went shopping and prepared the buffet for family who were visiting at tea time.

Everyone started to arrive early evening as Boy Wonder and Superman returned from football. We were a little unsure how he would cope but all in all he held it together fairly well. Lots eaten and lots of playing before we said goodnight to everyone.

Sunday was a chill day in comparison. After Cat Girl's horse riding lesson we visited a friend to give her a birthday gift and then went to Supergran and Biker Gramps new house ( as they moved over the weekend.) Boy Wonder was very tetchy and complaining of the smell of  paint which was quite faint now. To finish the weekend we met Boy Genius and family at a play centre for a couple of hours of energy release. The play centre was fairly quiet so didn't present with any real problems which was nice.

We arrived home about tea time and settled down to eat and watch tv.   Boy Wonder started to get quite upset and saying that he didn't want to go to school and that he hated it. We provided lots of reassurance and distraction which eventually proved to settle him and get him to sleep.