Parenting through the intial diagnosis & beyond

Everyone has a different experience of parenting an ASD child. For some there is an obvious difference at birth, for others their children appear to develop normally then regress around 2 - 4 yrs old. My son was my little shining light. I did notice when I took him to my post baby antenatal class, that unlike the other babies he wasn't looking me in the eye. But his speech and language developed early, he didn't initially have the problems other ASD sufferers have with speech & communication. He was saying "shaun needs some juice, Cory wants some food" to the carers at daycare when the other toddlers were still saying "ju" for juice and not much else. His first complete sentake at 14 months was "here he comes on a bike", followed soon by "here comes another ambulance" I was soo proud of him. By 18 mths he was inventing alternative versions of nursery rhymes.

My son had a great big smile that he flashed at everyone. I was so proud of him because people loved him. So to lose all that, to have my son become someone who was dangerous to have around other children, whose speech became broken & unintelligible. He became someone who refused to interact or communicate with others, who pushed others away, who made others feel really uncomfortable to be around him. he started biting other kids at preschool, throwing heavy objects at them. I didn't understand then that he was autistic, I just knew something was really wrong.

I took him to a psychologist who diagnosed him a gifted, just before what I call his first major breakdown. I didn't know what to do, where to go. I knew there was a problem I knew he couldn't play with other children safely any more, but I didn't know where to go with it. At pre school he was assessed by Special Education as requiring a teacher aid, but it wasn't until 6yrs old that I was pointed in the direction of ASD and got a formal assessment. What is hard to understand from the outside, to anyone who hasn't been through it, is the grief that a parent goes through when their world is turned upside down, when a child that seemed to be blooming, is lost & you are left with someone who at times seems to be an alien or a monster. I used to cry myself to sleep sometimes wishing I could have back that beautiful little boy that I was so proud of.

There are no warm fuzzies, or if there are they are few and far between, from family & friends when you have a young child with Autism. People recoil in horror more often. When you first seek professional help, you are still struggling to come to terms with your child & the depths of trauma you are going through, as you observe your childs distress, & feel powerless to help them.

I went to the mental health people looking for answers & found they had none, but they are offering drugs. drugs which other ASD parents have said have made their children worse than before. it's bad enough as it is, the chance of worse is unbearable. These were the same drugs that - prozac, that a friend committed suicide on, ritalin that his father was shooting up his arm, that had made his father homeless, living on the streets & eating out of garbage bins. I found myself alone, in a world that made no sense, being bullied to take a path that offered no real hope. I chose, to take my hope back home, to cling to it like our lives depended on it, which they did. I chose to belive in my boy when no one else did. I chose to never forget that beautiful whole person I seen once long ago.

I chose to be alone, to be isolated, to be rejected, to be an outcast. But I chose to stand by my child through thick & thin. The only thing I could offer him, & the main thing he taught me was unconditional love. & I cried & I cried & I cried because for a long time there was none else who loved him. No one else who wanted to spend time with him. I only survived because of one friend who lived in a nother country, who was parenting an adult child with schizophenia. She was always there for me to talk to.

I wanted to write about my experiences with the professional I dealt with. But at moment I'm just laying the foundation that that sits upon. My son is 16 now, he's starting to be a beautiful, gifted, sensitive, intelligent person again. He still has a mass of challenges but the struggle has been worth it. I realise I need to tell my story, our story, for myself, for healing, but also for others because I never want anyone to have to be as alone as we were. have to pause for a while, and come back later....