March 22, 2014

Jo_WorganI look at my little boy and often think about what the future holds for him, every day I worry. I worry what will happen to him once I am gone, I worry about who will look after him and if he will be safe and cared for. I do not know if he will be able to care for himself or it he will need additional help, I worry about this too.

I worry for Stephen and the burden he may feel in caring for his brother.

Then I worry about the family as I know they worry about me.

I worry a lot.

But when chatting to us parents and asking how we are we simply nod and say, ‘ thank you, how are you?’ We never truly reveal our inner sadness, how we really feel, that every day is a constant battle. Don’t get me wrong I am a very optimistic person and enjoy life; I make the most of my little boys. Still at the end of the day there is that niggling that we are never really truly settled, that we can never really truly relax.

We face a constant battle to get the services put in place that our child need.

We then have a battle to keep them in place.

We constantly try to make our marriages work; it is a fact that parents of autistic children are under a great deal more stress, less time spent together, one parent caring for the autistic child in essence means less family time together and this all puts a strain on the relationship.

Trying to devote time and look after our other children is often guilt ridden as most of our time is spent in caring and worrying over the autistic child’s needs.

We play at being peacekeeper, this is a FACT. We keep the peace within the family, at school, with other parents we meet and complete strangers.

One huge fact that we will never reveal is that we are lonely. We are often on the outside looking in, looking in at both society and our own child, unable in a way to reach both. We are isolated from society due to our caring role, lack of financial support and understanding. We are isolated from our child as we are never truly allowed ‘inside’.

My child cannot tell me about his day, he seems to be locked inside his own little world and only at times of his choosing am I allowed in.

Parents of autistic children are isolated. We do not go to as many social gatherings with our children.

We then too have the comments and stares when out with our child and we try to make it look like we are not bothered. I often say to myself they do not understand how it is for us, how life is for my child, but it still hurts even though I carry on smiling.

This is at the heart of caring for an autistic child. We love them dearly, we fight for what are child needs and we speak up for them as who else will if we don’t? That is what every parent does. But inside we do hurt.

We hurt over the comments that are made.

“Oh he doesn’t look autistic” or “he will grow out if it”

We hurt when we see other children lining up to go into school, going out with friends, talking about their day, this is a totally different life for us. Our children are not part of that world. Of all the social interaction that takes place.

This however is my life, it is not a choosing, it was thrust upon me but as any mother would do I get on with it and accept my child for who he is.

So even though we may say that everything is fine, believe me when I tell you that we will never say that we feel lonely, isolated and utterly worn out , that we worry constantly about our child’s future and how society perceives them.

We keep the feelings buried.

However I am a happy person, an optimist and although the above is true what is also true is the support that other parents of autistic children give to each other.

There is a very supportive autism community out there that many people do not know exists. We as parents support each other as we all understand. An our children are different, as are all children, but we all share an invisible bond of just ‘knowing’ and we gain great support and comfort from this.

We also, as a collective group and united voice, raise awareness about autism. This is very much needed in a world where acceptance and understanding is still a long way off.

The blog was originally published on the Huffington Post UK website

About the author 

Jo Worgan

Jo Worgan is a published author, writer and blogger. She has a degree in English Literature. She writes about life with her youngest son who is on the autistic spectrum. Jo tweets (@mummyworgan) and is also a freelance columnist for the Lancaster Guardian. ‘My Life with Tom, Living With Autism‘ is her second book and a culmination of her blog posts, and available on Kindle now, along with her first book, Life on the Spectrum. The Preschool years.

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