A parent’s point of view of autism by Kerrie Berroyer
Written on 29th Feb 2016 by Alex Lowery
Today, we have a guest article by Kerrie Berroyer. Last week I wrote an article for her website about how I see the world as a person with autism. You can view the link to this article here. I asked her to write one for my website as well. She’s written about her view of autism as a parent of an autistic child. I hope you enjoy reading this article and see the angle of autism from a parent’s perspective. Enjoy!
My name is Kerrie Berroyer and I am a mum to a 10-year-old boy who is non-verbal autistic. I have been kindly asked to write a blog on my own experiences for Alex. There is so much I could write about, so I will summarise as best I can a snippet of what my fears and joys of a mother’s perspective is, so far.
I am the owner and founder of www.dazlious.org which is dazlious-learning the language of autism. I welcome all who are touched by autism, to join my blog discussions and contribute your own experiences.
Jeorge was 4 years old when he was diagnosed; we already knew he was autistic, as I had been early years professional for 15 years. To begin with, even with some knowledge I was terrified. What would this mean for Jeorge? Would he ever speak? Would he ever stop head banging and crying, screaming and be afraid to go outside? We were drowning and out of our depth. I read so many books and researched so much until I almost drove myself crazy. I worried about dying, something I never worried about previously. Who would look after my darling, precious son, who would understand his needs and who would honour him like we tried our best to do?
Eventually I took advice and stopped reading books and started to listen and feel what we needed as a family, this was our autism. Through the years we have met many families and people on the autistic spectrum, I learnt each of us has our own unique autism. There is no right or wrong way to live or to support. No right or wrong therapy or strategy to try.
Once I stopped trying to please outsiders and other opinions of what we should be doing with Jeorge, as many opinions came to us from all angles, Some of which was shocking which was because of a lack of knowledge and true understanding of Jeorge’s needs and reasons for such extreme behaviours. Some was perfect for us and helped.
Jeorge is almost 11 years old now, he is still non-verbal, and we have offered him various communication tools. He uses them all in a small way. PECS, a communication aid, sign language and body language, a multitude of sounds we now have decoded and, yes! Even mind melding/ telepathy. I have learnt over the years to read what Jeorge is telling me, He sends me messages through pictures I receive in my own mind. I am still learning this I miss so much of what he is telling me, but I am getting better and when I do, it is stunning!
We learnt over the years to fully embrace Jeorge’s quirks, His love of nature which is easy as we live in rural Wales so spent as much time as possible in streams, rivers, forests and swimming pools. We also stopped buying him traditional toys and instead bought sound and light up toys that he adored. We allowed him to spin his toys if he wished; He eventually stopped head banging as he became more relaxed as his sensory needs were being honoured. If he needs to stim, flap, jump, spin we do not ask him to stop, we have learnt he needs to do this for a multitude of reasons.
I am constantly learning about myself, Jeorge is teaching me skills such as patience and letting go of any fears of the future, As Jeorge has taught me to live in the moment. Jeorge has shown me how strong I am, He has shown me how big my heart is and to see the joy and the beauty in everything. His lack of ego is humbling and his absolute joy of living, despite the challenges is inspiring.
The honest truth is I believe Jeorge was born the way he was meant to be. We do not see autism as a disease or illness to be cured. It has its place here in the evolutionary process of humans. Is it challenging and scary, do I feel hopelessness at times and that moments I have no idea how to support him? Yes I do. For autism raises many challenges for both Jeorge and us. 
I know’ autism is a complex and highly intelligent condition, The more we watch and listen the more I see Jeorge sees and feels so much more than I am aware of. I am discovering this of other autistic people who are now able to communicate through touch type and are writing books. Alex and many others are educating us with their own experiences and want to share their autism. Thank goodness I say, for with the most heart-felt intentions so often non-autistic carers, parents & professionals get it wrong. This is the time for autistic people to be heard, those who are willing and able to share the real insight to autism can build the bridge between two very different ways of thinking and being. I do my absolute best every day even if sometimes things do not work out the way I had hoped, I am sharing our world in hope it can offer some guidance to other parents who are on the beginning of their autism journey, a community that can grow and educate. One day autism and the people who are labelled with it will be seen as blended in as any other person because our acceptance, compassion & understanding will be so much more than it is now.
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