'Everywhere I turn, there is a new battle to fight'

March 30, 2019

 

My name is Kim I’m 35 and single mum to Rueben who is 4 and we live in Derbyshire.

Approximately 15 months ago, Rueben started to struggle in everyday situations at home and pre school. It started with him lashing out at other children, and then came the more severe self injurious behaviour, which in his case was head banging.

Fast forward to the present day, and we have embarked on the journey called ADOS. 

Autism Diagnostic Observation Schedule.

I’m not going to lie, in the beginning I never thought Rueben could be autistic. I was ignorant.

Rueben possesses a number of the characteristics of ASD - Autism Spectrum Disorder. 

He has difficulty dealing with change and social interaction. He has unusually strong reactions to his senses, specifically sound, taste and touch. He is also very intelligent. He speaks words in Spanish, French and Chinese and can read his own bedtime story. He has a fascination with shapes. He doesn’t just know a circle, square and triangle, but he talks about parallelograms & trapeziums.

The ignorant me thought that him happily playing alone for prolonged periods (despite the presence of other children) and him not wanting to take turns was purely him being an only child. I thought the fact he would happily talk to any adult (even total strangers) meant he was social, so surely he couldn’t be autistic. Right? Wrong!

Now I have taken the time to educate myself, I realise there are so many characteristics he possesses, that I would be shocked if he didn’t get the diagnosis of ASD. We have our next appointment in a couple of weeks and we will find out then.

The past few months have been a living hell. I’ve lost count of the amount of times I have sat head in hands and cried, but I need you to know I have never cried through shame or denial. 

There have been negatives throughout the journey so far, and it seems like everywhere I turn there is a new battle for me to fight, but there are also lots of positives. I have not only educated myself, but I am educating others. I have met so many amazing people through various support groups, they will be friends for life. 

Most importantly I have learnt to do what every parent strives to do, and that is give my son a happy life. By having a routine and minimising sensory overloads using various techniques I’ve picked up along the way, the self injurious behaviour has decreased.

Going forward, I want to continue to raise awareness and educate people about ASD. I am not an expert and I still have so much to learn, but everything I do learn I will share.

 

Author credit: Kim Mullins

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