Learning the language of Autism


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it has been a while since i wrote a blog. As I live within the autism world for me it has huge waves of up's and downs and then a sort of surfing flowing. It isn't always about autism that i am unable to write or share, it is being busy in life and allowing myself time to just be.

Since having Jeorge in my life I have become aware, more than ever the importance of looking after myself.

This comes in the obvious way of eating good, healthy, fresh food and exercise and as much sleep as we can get. It is a lot more than that.

Research shows parents and carers of autistic people live within a constant state of heightened stress likened to a solider in combat.

when i first read this i was shocked and automatically dismissed it as a truth for me.  I have no idea what a soldier goes through on an emotional level,  Of course I can guess but to say I am experiencing the same levels seemed a tad over the top. 

Over time and experience with autism I have learnt about my own body and emotional well being.  I have become a lot more tuned into my moods, resilience and my weakness points.

i am reminded further when friends visit us and they see how caring for Jeorge is so very different to caring for a 12 yer old who isn't autistic..  

Living in it day by day our life is normal and beautiful. I forget sometimes why I am feeling so overwhelmed or tired.  I forget why I feel total exhaustion on an emotional level.  I forget why I at times I feel so teary that I cannot explain why and automatically come down hard on myself like I am a huge mess and weak because that day I am unable to cope with the immense feelings of uselessness.  

I forget why sometimes i get bored with the same routine in every little detail. I forget why I sometimes i find it hard to see the joy in tickling Jeorge in exactly the same way right down to the finest detail day in and day out. 

Groundhog day is a concept I know so well. Just like the character in the film I can get complacent and flippant, like i disconnect because I know every nook and cranny of the smiles, the noises, the time scales and the actions of each activity. 

When this happens I feel wretched.  Guilty, cruel, weak ...bla bla bla....and down the rabbit hole of uselessness i disappear, until 'smash' I land at the bottom battered and bruised.

There I lay, alone in the dark in despair. 

It is horrible down there, It isn't a place I like to go or even choose consciously to go to. But nevertheless sometimes it is there I found myself. 

In the early days of autism I found myself there on a fairly regular basis. Constantly tired with overthinking and worrying about the future of Jeorge and what would become of him. It became so bad that I realised i was creating a self sabotage like state of being.  Even the positives became a struggle as i allowed the negative to consume me. 

Then I remembered how much I love life, How far I had come in my life prior to having Jeorge.  All the life experiences I had been through. How I had overcome them and I remembered mostly the joy I had lived with, the happiest of memories and experiences.  How much I wanted to become a mother and have my own family. I remembered how much love and compassion I have within me from as young as I can remember.

I took myself to a place of stillness, a place of self nurturing. yes, that dark and cold rabbit hole became a place of solace. I feel blessed that I do believe in Angels and earth spirits. I belief in love above all else and the inner strength and inner love that is more powerful than any other.  Self love. This took me a few years to be able to reach in and find it but the more i did the easier it became. Th biggest surprise of this practise was this:

I allow the feelings of hopelessness and despair to be. Allowing them to be seen and not suppressed or ignored, covered up with bows and rainbows. To accept that in this moment I am feeling low and to give it space and attention.  This is self love, this is counselling oneself, listening to the words i yell out and then hugging and loving myself. 

The strategies I use are: meditating, whether it be walking or dancing while I do so. Sometimes I lay in the bath, I listen to the music i love, even if i do not feel like dancing, i do it anyway. I switch off the tv and do not look at any social media.  I cry, I shout and I eventually laugh and come back to the truth which is that I am doing the best I can and I am amazing. 

I also do not see Jeorge as disabled or ill or broken, something to be fixed or cured. I see him as a unique individual with a purpose on this earth. I see him as my son, my little boy (well young man) I see him as a person in his own right with plenty to offer the world, as much as any other person. I see Jeorge as a teacher, a wise one at that.  His lessons may not seem obvious to those who just see a flapping, squeaking non verbal,awkward boy.  To those who spend time with him learn very quickly what Jeorge offers to the world and the people in it. I know he has much more to reveal as his life unfolds. I am excited by this as I know I too have more to reveal as my life unfolds..

I also know that although I go down the rabbit hole occasionally, I am OK with this now. I jump back out with more vigour than before because I would not miss a second of our lives together. 

Learning to love all parts of myself, the happy thoughts as well as the doomy gloomy thoughts has in fact freed me to live with an affection for myself i did not know I could have. We are our on judge and jury, no words spoken by others are as harmful as the negative words we speak to ourselves. If we believe others who may judge us negatively we can become self harming. The solution is to treat oneself the way you would a best friend in times of despair. Hugging, listening, just being with and holding them while they cry or share their fears. The more we do this with ourselves the less affected we are by others negative views or more importantly the more able we are to support ourselves when we do feel despair. The easier it is to bounce up out of the rabbit hole.  

Being afraid of the darkness leaves us in a place of emptiness.  Entering the darkness is sometimes a place we need to go. 

my rabbit hole is now a place I have accustomed myself to, i have even created cushions and fabrics i know i will need to help ease my bruises and wounds! Although dark, it is my space, no longer cold and unforgiving but instead quiet, secure and full of love.


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