Sunday, 3 August 2014

Summer, Autism and Schedules!

Well the summer holidays have truly begun.  Whilst many parents are looking forward to unwinding, having later starts, no more pack lunches or homework worries, looking forward to going out and doing activities with their children, our life may look a little different...
B has completed his first year at Thames Valley School.  He has really enjoyed it, him attending this school has made a massive improvement on his behaviour and positively impacted the rest of the family's wellbeing, plus he has made a good friend.  I am so thankful for this! The downside to this is that he was NOT happy about school finishing for the holidays. B needs routine and structure. He needs to know what to expect and when to expect it each day.  I know lots of parents may say well every child needs this and to a certain degree, yes they do. It is different for B.  His ASD means he does not have the social imagination to be able to put together how his day will be, what is going to happen and what he needs to do and this makes him very anxious.  He has social communication difficulties which means he cannot (at this point) put any of his anxious feelings into words.  When highly stressed and anxious, he shuts down his communication and this includes him listening to reasoning or consequences. This anxiety and inability to understand this communication can lead to him lashing out/meltdown.
There is no cure or medication which will make it all better.  That does not mean we or B are 'doomed' it means we have to teach him in a different way and it is NOT a quick lesson or a simple explanation that fixes it.  After attending an 'Earlybird plus' course, we learnt a lot about autism including how to empathise and see things from a different perspective, visuals - they were really big on this!, communications and different strategies. As B was diagnosed later at 7 years old, I knew lots of the common parenting strategies did not work for him, infact we tried so many, read so many books and we sometimes ended up further behind then in front! I knew we needed to try something different so we went for it. 
At first he hated the visuals, and I mean hate, however we remained consistent and he accepted them.  We learnt through trial and error what was and wasn't acceptable to him.  He does not like to stand out as being different so his visuals need to blend in and be appropriate to his intelligence level which is high. Children with ASD are visual learners so a visual sequence of what is happening or expected, is what I mean by visuals.  Our early ones look quite professional, all Velcro and laminated (this is so when he throws them as he didn't like what he had to do, we can easily rescue it) now they are hand written and colour coded, as he can read and interpret written information easily.  When we first started they caused lots of meltdowns and I wondered if it was worth all the effort but now he reads them through and accepts them! (waiver: most of the time) A massive step forward and it proved to us, that they do work but it takes time and consistency. He doesn't refer to them often as he has quite a photographic memory and he probably still hates them deep down but has come to acceptance.
Anyway, so before summer fun can begin B needs to know what to expect and when to expect it to keep his anxieties at bay.  Our morning and bedtime routine visuals do not change, we keep this at a constant always.  We then have a daily chart of all the things that will 'definitely' happen each day and those in a different colour happens 'most days' but not all, for example if we are out on a day trip - he will get lunch (a definite) but he may not have computer time (most days).  He does accept this as he has had advanced warning to process and accept the change, we can't just spring changes on him and expect him to accept it.  We then put up a weekly schedule, so he knows what the planned activities are for the week - this is kept simple and one week at a time.  As a family, we use reward charts to train our children and this chart is up so he knows what is expected of him and finally we have set personal challenges for our children to aim for during the holidays.  They like a goal to work towards and find it fun to have a challenge.  This does not mean we will have a meltdown free summer but it will certainly help. 
On top of this, B also has a sensory diet to follow which is an activity every 2 hours, to help him so he does not sensory overload which also causes meltdowns... B also doesn't understand 'relax, just go play' He doesn't do play, he ends up fighting with his brothers or mucking up their games as his social imagination is not there.  It has improved but his social interaction skills, especially in play, are not.  Unless he is watching TV or on the computer, he really doesn't know what to do with himself and this is stressful for him. If I tell him 'go make a junk model' He will need me to sit with him whilst he does it.  If I want him to do something other than the TV or computer I need to help him do this.  If I am lucky, he gets into it and I can sneak away.  In our house we have a 30minute computer time rule - each child has 30minutes play only.  With that in mind I also have a list of projects based on B's interests to keep him occupied during the at home days or downtimes after an activity.
Whilst I do really enjoy organising things I personally hate having every part of my life planned out.  I prefer to be spontaneous, to wake up and go with how I feel but B is the complete opposite and I have had to accept that this is what he NEEDS to cope with the day and ultimately I want the best for him - not just meet his basic needs.  It is hard and it is exhausting. I have booked him onto a couple of play scheme days to have a break (although that comes with another set of issues which I will explain another time) and he needs time to adjust to 'new' people so meeting up with others can be tricky too. As I said before, all of this doesn't guarantee a meltdown free summer but does help us as parents feel more in control.  Thankfully my gorgeous husband is off for 3 of the 6 weeks to keep me sane.  So to us the holidays are not really about unwinding lazy carefree days (as much as I wish it were) but structure and scheduling! We will have fun in our way, we will create happy or at times just 'create memories' for our family.  Whilst my son may seem high functioning and even normal to the passer by or acquaintance, a lot of preparation and hard work goes into this behind the scenes. 
I will try and post some more during the holidays of what we get up to!
Happy holidays!!! 

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