Tuesday, 30 October 2012

Where've i been...

Well it has been a whirlwind first Autumn term.  I knew it would be, so hasn't left much time for me to post, so thought I'd explain a little what we've been up to...

I now have 3 children at school and 1 child at home. However I have not had anymore time at home... In fact life has been so busy I feel I barely keep up with the day to day running of life and not really doing anything in the way I would like to. I guess everything comes in seasons and his ones a busy one!

The reason why, life is at such a fast pace for us, is that help is on its way.  After the holidays, the doctor referral and statement process has been in action.  We were referred to CAMHS for extra help and support, during this appointment our son 'presented' in clinic.  Although highly stressful, they could see for themselves what we are dealing with.  From this, we are now part of the BOSS team - an intensive assessment support service.  Also alongside this we have been going through the statement process and part of this (getting help in terms of supporting his education) more professionals are now involved.  We/I have been seeing someone or on part of a course at least once a week.

This may not seem a lot but it is constant arranging of care for the other children, time to then action and process said meetings, as well as doing family life with 4 young children.  Also the ASD factor is there and very much part of our everyday lives, which effects us all. He has 'presented' pretty much everywhere, which is a sign that he is not currently coping with how life is at the moment. This takes its toll on everyone as it takes time to recover.  This makes our world smaller, as we try to keep a low arousal presence for his benefit.  We do keep his life to a structure/routine and try to minimise his face to face contact with the different professionals to keep his anxieties at bay.  It has had a big impact on one of his siblings and therefore more time has been needed to help him also, as well as diffusing B.  We are grateful for the help (that is coming) and we are willing to do what we can to help our children.

I can completely understand why parents of ASD children choose not to go places and can become insular.  I don't think you can appreciate the stress levels of it all until you walk in our shoes.  Our son looks completely normal and you can have 'normal' conversations with him, when he is in the right place.  Public tend to be less sympathetic with families and children if you do not 'look' disabled.  The perception is that 'he is trouble' or that his parents have failed him as there is no outward tell tale sign he has a brain disorder.  When his siblings act up because they live with the emotional stresses of our everyday, they are then seen as 'trouble makers' or to keep away from them as they are naughty. This is purely because they do not see the full picture that is in front of them. Sometimes I have the time and energy to educate, other times I don't.  Some do not see the chaos we live with and therefore presume its only minor or just happens occasionally but that is not the case - autism doesn't have a night off.  The other side to this is because he has Asperger and is verbal, it is seen as not as bad as those who are unable to communicate with ASD.  Obviously, I've not personally experienced this but after talking to a lady who's son does severely present in this way (classical autism), she still believes that what we go through is more challenging.  With her son, the choices are simple and his needs although very hard, it is easier to know what's best for him.  With our son, the choices are complicated, his needs are complex and it is not straightforward.  
Whilst some people have a thick skin, others have to develop it over time.  When we have been out and about and our son presents, normally I'm so focused on dealing with the situation that I don't really notice everyone else.  I have also done a course - sign a long - which helps aid communication for ASD and when I change my manor, language and start signing, it is normally a clue to those watching that all is not so black and white and they tend to back off. 

Also with ASD children in order to help avoid meltdowns, it is important to keep their environment, low arousal.  My son is particularly effected by sensory.  We naturally drown out noises/lights etc and concentrate on what we need to, whereas for my son everything hits him in one go.  All of it has to be processed in his brain and then complete the task at hand.  This is highly stressful, as you can imagine - trying to complete a complicated maths question that requires your full attention, with lots of noise and lights directed at you constantly.  Having to work so hard at 'keeping normal' if one thing is added to the pot, then a meltdown will occur.  This is one reason why a meltdown can happen.   There are also other reasons and things, that will set our son off.  It is not personal.  In his head the world must be such a confusing place with everyone speaking and following a code you can not understand, that is always changing and evolving, desperately trying to find your way through the maze of social conduct.
Learning more about my sons disability helps me to empathise with him, and to help him.  We therefore choose low arousal activities or choose not to do certain tasks, as we know it will be too much for him to cope with.  It is not a case of more exposure, the more he will learn. His brain does not work in the same way, whilst he is capable of learning and adapting over time, it is a completely different process and learnt in a different way.  This may seem like he rules the roost but when you know what happens if you don't follow this, you see the full picture and then it makes you go back and define what it is you actually want/need to achieve and you evaluate whether its worth it or can it be done a different way.  Its hard working all of this out, not to cotton wool him but not to destroy any existing progress or friendships also considering the impact of the rest of the family but then again, no one said this parenting lark would be easy...

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