Special Saturday : Special Needs in my Life

Special Saturday is a great hashtag. It encourages everyone with whom Special Needs features in their lives, to write about it, status check it, tweet about it and link up in order to try and raise awareness of living with Special Needs. As you know I am always interested in any ways and means of raising awareness for this very reason (hence why I started The Disability Diaries) so I will be joining in this fantastic movement.


This week the wonderful Special Saturday prompt was to start your thoughts with

'Sharing my life with a person with Special Needs has...'

These are my thoughts:

Sharing my life with a person with Special Needs has rocked my world.  In a multitude of ways.

Firstly it rocked my world by oblitarating life as I knew it.  Kind of in the way that Superman hurls his enemies into space to float around in a timeless, impossible void.   I couldn't grasp the concept that my baby had suffered brain damage.  But there it was.  Quite literally in black and white on the scan.  A mark the size and shape of a thumb print on the left hand side of the brain.

Then my world was rocked back to shape by seeing the amazing miracles and achievements that my little boy was making everyday.  Will he walk?  No.  Will he sit?  No.  But he can tuck away a three course meal with pleasure and enjoyment and that is sadly something so many of the other wonderful Special Needs children we know can not do.  I learnt to be thankful for all the things he could do rather than resent all the things he couldn't.

Sometimes my world gets rocked and crushes me down.  Like today.  Whilst having a stretch out on his bed, from which he can see into the garden he said to me 'I can hear my brother, what is he doing?'  To which I replied 'He is on the trampoline.'.  He sighed and said 'I can hear him laughing.  He is having fun and giggling.  I can't do that.'  C.R.U.S.H.E.D.

Then there are days when my world rocks me into action.  I get up and think today I am going to get somewhere with XYZ equipment issue / person to chase / quote to get / charity to approach / school meeting.  I call and pester.  I email and leave messages.  I write letters and research things, until I feel I have made some small step forward. No matter how small it is.

There are also the days to recount when I have met some of the most wonderful people ever.  People who I really do not think I would have met had it not been for my son with Special Needs being in our life.  They are warm, loving, enthusiatic, friendly, open minded, strong and inspiring.  They are the teachers, teaching assistants, volunteers, helpers, carers, who help to look after my son when I am not there.  They are a special breed of human.  A wonderful one.  Their kindness rocks my world.

Sharing my life with someone with Special Needs has, I think made me a better person.  I used to be scared of and ignorant to disability.  I had never had any experiences with anyone who had disabilities or serious illness.  Now I understand that you smile and say hello and chat to that person in a wheelchair, or using crutches and the person standing by their side supporting them.  You chat to them as you would absolutely anyone else.  You don't look past them and make them invisible.  You ask about their disability and take an interest in that person. 

My sons Special Needs are great and varied.  They have caused issues to arise that I never would have dreamt would be something we would deal with under the umbrella of Cerebral Palsy.  But on the other side of the coin, his Special Needs have made our family closer, united, stronger.  Typically I would say we are a family who would usually take a backseat.  Just go with the flow.  Take what is said as what is right. 

You can not take that type of stand for your child with Special Needs.  You have to be strong.  You have to question.  You have to argue for what you think is right for your child and not just take the word of a professional, because chances are they will have only spent mere minutes (sometimes seconds) reviewing your child.  You know every inch of them.  You have to get your child the voice they can not yell with.

Sometimes I think I do a wonderful job, as a Special Needs mum.  Sometimes I think I do not fight hard enough for him.  We do not have every piece of equipment he probably needs.  We do not have some of the luxury items he could have to help enhance his life.  Sometimes it is hard, to get through everyday and on top of that find all the energy needed to do that extra fighting.  Other days it isn't hard.  Other days it is wonderful and I realise that sharing my life with a person with Special Needs has opened my eyes.