Monday, 6 April 2015

Autism Awareness - Carers

The other thought/judgement, I had (before I embarked on this journey) was about carers for disabled people. That caring must be in your heart from the beginning.  That somehow they were just more patient, kind, caring, a selfless breed of people.  It was all just natural for them.
Well now that I am one of those people, I can assure you, it was not in my heart from the beginning... I have had to learn - learn fast and learn hard.  I knew nothing about autism. I have read books, searched websites, blogs and been on lots of different courses, met with lots of professionals to learn all I could in order to understand my son.  As his mother I have to be his advocate - so I needed to learn.  Information and help is not easily accessible, you have to find it and prove that you need it.  I believe the character qualities (to have an outstanding patience, kindness, compassion) that I associated with carers, have developed along the way, born out of love for my son.  I am no different to anyone else.  I have merely done what I have had to do.  Awareness is needed as it is not just the disabled person that is affected.
I think I believed that disabled people always just got what they needed, when they needed it - that is not ours or others (from the different people I have met) experiences.  Health and social care systems can be so stressful and time consuming to navigate through and it appears you have to be at absolute breaking point/rock bottom to access some of the services - or have deep pockets to afford private.  Education, is another great battlefield.  Every child has the right to an education in our country, but accessing it - is not always that simple.  Resources are tight and I feel I have to fight in all corners to be heard, to get my son the help he needs.  Dealing with lots of professionals/agencies, following and discerning which advice to heed (as it can be contradictory) can take away the freedom from just parenting your child in the way you had wanted and it can be overwhelming at times.  This all means lots of appointments and meetings.  All this fighting is time consuming and draining.  This is all on top of actually caring for my autistic child, not forgetting of course my other children and husband. At this point in time, I cannot entertain holding down a job/career and for now that part of my life has to go on hold.
I now have a great compassion for carers.  At the end of the day - I do not have a choice, he is my son. This is not a relationship I can simply walk out on, as its become too tough, too much or he has become too violent, he's pushed us too far.  There are many times when I have felt it all unfair, that this is not the life I would have chosen but this IS the life I have.  When help doesn't come and all there is to do is to grit your teeth and just hope this season will pass quickly, IT IS HARD.  There are times when it does get me down, when I want to rebel, when I want to scream at the person who is saying 'yes but you take it so well' or 'it just comes naturally to you' and whilst I smile, underneath I want to ask them 'so what are my options, my alternatives then?' There are no other options, he is my son - despite all that I may find difficult or unfair, I love him.  Its not really as simple as saying social services you have him. To be honest, I don't think social services would take him and it would just end up being another meeting to add to the list, whilst they try to convince you to attend a parenting course...  Love stops you from giving up, it helps you through the tough times. 
Being a carer is really hard.  I feel as though I have lost my identity at times. I understand why carers are considered vulnerable - I have felt this many times.  Stress levels are high, along with depression and marriage break ups. Career aspirations, desires even hobbies get put on hold but my capacity to love has grown, my compassion and empathy for others has increased, strength I never knew I had, has emerged.  I feel I have had to give up being me, at times I have forgotten who I am.  I live this everyday and so I guess when the pressure is on, it is your character that comes through.  I sometimes feel that I am more character than personality.  I get fed up of looking at my facebook feed and seeing autism, kids and Christianity - where did I go? why do I always have to be so responsible and sensible now? It is when the quieter times come, when things are calmer that it can the hardest, as you have the time to think and wonder who you are... When these times come, it helps me to reflect/heal from some of the things we have just been through (AKA write blog posts) so although I appreciate less drama, it can just become an internal battle.  When I look inward, it can be depressing, to think of all I have lost, that the best thing to do is to look outwardly and look at what I have gained.  There are times when I look at other peoples problems and think 'what on earth are they complaining about? really that's a big deal???' and I imagine there are plenty of people who would say the same about me.  I know we are all made differently and our capacities are made in different sizes.  This helps me to have empathy for others - we all face our own battles.

I feel that we are very blessed in many ways.  I have learnt a lot on this journey (often things I have had no desire to learn about).  I want to raise awareness for autism as so much work goes in behind the scenes to be 'normal' that often it just becomes dismissed.  I am grateful to have become a mother and I am grateful to have a husband who helps us in so many ways.  I am grateful to have my faith, it helps me to remember who I truly am, that I am truly loved and that there is purpose in what I do.  At times, I do get cross at God, I tell him how I feel and God has given us great provision and help through answered prayer.  There are times when I don't 'feel' like it but I know I can trust in God, he has never let me down.  Others may look at my faith as a crutch, a cult - picking on a vulnerable person or completely a figment of my imagination but to me it is a very real, important relationship.  My faith helps me through the tough times - not in a Ned Flanders (character from The Simpsons) kind of way but gives me hope.  I do not always behave in a Christian way - I am human and make many mistakes and have many shortcomings - this does not mean I have given up but am working things out, learning lessons as I travel through life.  God does not demand perfection from me, I am accepted as I am.  Other Christians or people like to throw the verse 'God never gives you anything more than you can handle' and quite frankly I would quite like to throw that verse back at them with rocks tied to it, as I feel I have been pushed to the brink many times but I feel God takes me to this point, so that I will declare my absolute dependence on him and together we will handle the situation, nothing is too big for Him.  My friend helped me to see this.

At this point, I guess facebook is very reflective of the fact, my life is about autism, my children and God (not in that order and I do have a husband in their too).  I don't feel passionate about autism at all, its just one of those things I have had to deal with and cannot escape from.  I do feel passionate that my calling is to be a mother, and whilst the world may look upon this and say yes a mother but what else are you going to do? as if I need an occupation to be seen as significant - being a mother, a carer is enough.  I could not do any of this without God helping me.  Autism is part of our life, not a choice so I want to raise awareness, acceptance and understanding as I know I came from a place with none...

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