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I am Bernadette O’Donnell. I was born in South London. My parents are Irish and I have two brothers and one sister. When I was 5 we moved to Clacton-on-Sea. I grew up in a very close Catholic community. I moved to West London in 1995, met Yohan; we were married in 1998. We have two boys: Kieran, 17 and Daniel, nearly 16 – and we are ‘living the dream’!
Kieran was diagnosed with autism when he was 2 years and 7 months. Because he wasn’t baby babbling at 18 months we took him to the health visitor, she referred him to an SLT (speech and language therapist) who in turn referred him to a paediatric consultant who diagnosed him with autism. I still can’t believe it!
I think if I had had Daniel first I might have picked up that he was developing differently to other children.
We weren’t given any guidance or support. The specialist health visitor was very clear about all the things we couldn’t do which made me more determined. I had to make sure both my boys had a childhood.
We have to do everything differently; every detail has to be planned for but we do what everyone else does. We have been to Florida, Canada, New York, France, and Ireland. It was important to me that Daniel didn’t miss out. I do feel guilty that he wasn’t able to go to lots of his school activities because Kieran couldn’t tolerate it but I did my best.
Kieran developed some very extreme behaviours when he was 10, scratching, biting, headbutting me, and hurting himself. We got an appointment with a psychiatrist who eventually prescribed medication to manage behaviour and anxiety. She was reluctant because of Kieran’s long-term mental health but I was concerned about Daniel’s long-term mental health too. He was 9 years old and recording his brother whom he loved, attacking his mother who he loved so that I would have evidence.
I worry about the siblings. When Kieran would have a meltdown in public I would have to sit on the ground and hold him and calm him, and while the entire public stared at Kieran and I; they also stared at a little boy who is the collateral damage of autism.
I have huge concerns about the sibling. If Kieran didn’t sleep, Daniel didn’t sleep and while Kieran’s school would understand, Daniel’s teachers could just think he’s lazy or not interested. Kieran’s autism has left Daniel shy and lacking in self-confidence because being the centre of attention has always been a very negative experience.
Kieran and Daniel are very close, Daniel is a brilliant brother to Kieran, he always has been. I know when they are adults Daniel will always look out for him. I have been clear: he’s not his keeper, he’s his brother. I am very lucky with my boys.
Kieran can be very aggressive but this is how he communicates his frustration, with limited verbal communication life can be very difficult for him, saying that he is just the most wonderful child. He has brought us so much joy. He never judges anyone, all he wants to do is sing and dance and eat. The world would be a better place if we all lived life by Kieran’s rules.
Having a child with autism is a constant battle. You have to fight with consultants, clinicians, schools, social services, the local authority. They turn you into this ferocious beast because they just don’t listen. We are so tired and we just want what is best for our children and it’s almost as though we have to beg for our children basic rights. It’s so wrong.
Being the parent of a child with autism can be very isolating; you don’t get to meet the other parents at the school gates or at school functions. It can be really lonely. I am lucky because Daniel is in mainstream and I have made a lot of friends through his school. If you have a friend with a special needs child, keep an eye on them. I am often trapped in the house in the holidays because there is nowhere for me to take Kieran; I can’t take him out on my own anymore. I am very lucky because my friends call in to me and make sure I am OK; it’s so important. It’s the difference between staying afloat and drowning.
In 2016, I was part of a parent group who fought Ealing Council to continue to provide overnight respite. Ealing Council were under the impression that they didn’t have any families who needed overnight respite and tasked us to find them and find them we did. We were awarded £1.5 m to build a purpose-built new facility which is due to open in April 2020. It’s 12-month behind schedule, but at least we will have our own facility. Kieran goes to overnight respite in Hounslow. I thought I would never let him go and that we didn’t need it. But the truth is he loves it and we are grateful for the time, we get to sleep and do activities with Daniel that we couldn’t, like going to the cinema.
I did work in the NHS for 25 years, mainly in GP Computerisation and then Emergency Planning; I had to give up working full-time because Kieran needs me and now I work in a primary school as a learning support assistant, working with a child with autism.
I often feel that I had lost my identity when I had to stop working because it was the only part of me that was mine. But I love working in the school. The financial loss is considerable but Kieran needs me to be there for him; he will never outgrow me, my very own Peter Pan.
If I had to give advice to a parent whose child had just been diagnosed, it would be to love them. Find out everything you can and trust your instinct. It’s not the end, it’s the beginning. You have been given an extraordinary child and you are about to become an extraordinary parent.
It’s really important to look after yourself and not get lost in all of this. I have an amazing group of friends who keep an eye on me. I always have something to look forward to and I write poetry. I run Facebook page for autism and for my poetry. You can also find me on YouTube.
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