Tuesday, 10 September 2013

Stop The World I Want To Get Off!

Where once there was a storm we now have calm....  Or do we.  After a rather explosive week with our 'Bob' and busy weekend walking in a carnival, stripping two rooms and our voluntary groups first session back I am knacky nood!

My head is so mashed with information, thoughts, things to do, the shopping list... I am finding it incredibly difficult to actually get anything tangible done.  I'm not pulling out the screechy violin for sympathy votes but some days I wish the world would just stop...

Yesterday there was a link bouncing around social media regarding a National Service Bill, it caused a bit of a stir certainly in our circles, and after asking a few questions the response was this was a Private Member's Bill which had been put forward for debate but had been objected.  If you read the content the exemptions for SEN were vague, and at first glance unless you are severely disabled or have severe mental health disorders then you would appear not to meet the exemption criteria.

It brought home to me that even though parents constantly worry about our children, and I'm a parent of a twenty-something ordinary young woman with incredible creative talent and all round beauty, that for a SEN parent worrying is brought to a new level.  I mean I could see our 'Lil' doing the time, it would put her out and it would mean that her dream of working in Fashion would be delayed but she would cope. She would be mightily miffed if you sent her out in the field it would ruin her nails and there is just NO style in camouflage fatigues.  In principle the bill is about public service which in reality she is more than capable of achieving and many other young men and woman would be too.  I don't feel that need to constantly look out for the 'what ifs' or 'maybe's' like I do with our 'Bob'.  I'm always mindful that I spend a significant amount of time in fight and flight mode, ready for the next battle to come rocking up!  I'm wearing myself out without actually doing anything.

I mean can you imagine a group of high functioning autists or anybody on the spectrum deciphering the meaning behind a screamed "Double time!" or the response you would get if you shouted "Stand to attention!" Our 'Bob' would be looking for attention so he could stand with him!  And to ask 'Bob' to go out into the community do charity work or go overseas for development activity would be limited by sensory issues, anxiety about security, engaging in decision-making NOT, and polite conversation would cause a right whoha!  My point is that it is not easy!  I find that I make adjustments in our everyday life to ensure our 'Bob' can manage this crazy world we live in, I respect I can't change the whole world or everybody living on this planet's attitude (not through the want of trying!) and that's just life! It doesn't stop me worrying about issues I don't have control over and how it affects us.  So, I will keep wishing for the world to stop some days, I will keep putting on my armour most days and I will keep worrying about my children every day of my life!


  1. Good post. I think we all wonder how our kids would cope and their siblings. I always find my mind wondering when I am tired xx

  2. Thanks Wendy. I just can't help myself but worry, I have a terrible habit of over-analyzing everything! xx