Life has a powerfulway of making a person feel lost.
Grief, a diagnosis, a colossal change which has left you blindsided - all of these can make a person feel confused, isolated and as if their life is not their own.
Buncrana woman Aileen McGee is all too familiar with these feelings.
When her second son Cian, now 18, was diagnosed with autism she felt that life as she knew it had ended.
As she gave up her job to be his full-time carer and other major life-changing events took place, Aileen navigated her way through dealing with uncertainty - in herself and for the future.
In that time, she also learned more about Cian. She saw an intelligent young man who taught her inspiring lessons about life, how to embrace it and find the best way through it. Cian is non verbal, but the words he does speak are profound, Through them, he taught his mother to find, for them, a ‘Life of Our Own.’
This is now the title of Aileen’s new book, which offers readers 12 ‘stepping stones’ to empower them to live a more fulfilling and authentic life and to help them navigate through its challenges.
It is Aileen’s second book, following the successful, ‘A World of Our Own’ and speaking to the Journal, the mother-of-three said she was inspired to write it for two reasons.
She said: “I know my son is highly intelligent.
“He has taught me so much. I started to take notice of what Cian was saying to me through what he was doing and his behaviour. I wrote the book for Cian because of the verbal and non-verbal messages I was receiving from him. He was sending me direct messages through his phrases and when I studied it, I realised Cian was teaching me about life.”
Aileen also wrote the book as a response to all those who had written to her following publication of her first book, telling how they had experienced grief, loss and frustration and how this had impacted on their lives.
She said: “A lot of these people knew very little about autism but told me they identified with the pain and the fight for services. They identified with the feelings of being ignored and misunderstood or feeling like there was no compassion or acceptance. Many said the book offered them the compassion and understanding they felt was lacking. I felt a connection to them and as if I knew them. This book is my way of getting back to them now with a response.”
Aileen’s book offers the reader 12 stepping stones, each inspired by Cian’s insightful words and actions.
These include ‘All Boken;’ ‘Sad;’ ‘Sor-ee’ ‘Never Mind’ ‘Press the Button’ and ‘Choc-it Cake.’
Aileen tells how these words from Cian were filled with such meaning and lessons for life.
She writes how when Cian becomes emotional, he will say ‘sad’ repeating it “like a mantra” and then seeks out the sanctuary of his room to be alone with his grief. She tells how Cian allows himself to be sad, he does not repress his emotions and does not hide them. Aileen says, for her, being stuck in sorrow only delayed her grieving process and she became physically unwell. She tells how when she allowed herself to grieve properly and to feel sad like Cian, her physical symptoms began to disappear. Inspired by Cian, she allowed herself to grieve,
Through each stepping stone, Aileen offers the reader the chance to undertake some exercises which ask them to think about themselves and their situation in different ways and what they can do to move forward.
She says that while the book is not a ‘how-to’ publication, it is a self-help read because she still lives with challenges every day. She does not give you the answers but offers you a way to live a life of your own.
She said: “I’m someone who went through a life change and lives through it. I hope I’m creating awareness that you have everything inside of you to cope with whatever life throws at you. I am not minimising anyone’s challenges but I do think challenges are there to learn from and to rise above them.
She added: “Sometimes we just need a little bit of inspiration to live through our values and live an authentic life. So that you can know, you’re not on your own. You can do this, you have the power to get through. The book tells how you have the power in you to do this. I want to empower other people to live their lives to the full and embrace their challenges as something that will lead to personal growth.”
Aileen tells how she is still challenged every day in relation to accessing proper services and resources for her son.
She says that now he is 18, it has become even more difficult as he enters into the world of adult services.
Aileen discloses how funding for autism services are still hugely inadequate, with many resources coming from parents themselves.
She adds, however, that the community in Inishowen is hugely supportive and hails Inishowen Children’s Autism Related Education (iCare) and the Sonas Youth Club for their initiatives for young people with autism.
These too, however, are run by parents and volunteers, receive absolutely no funding and rely on donations from the public.
Aileen says Cian and all those with autism have so much to contribute and this should be nurtured and respected.
She said: “I believe all autistic people are highly intelligent. I think we still know very little about it. We still don’t know what causes it and many children with autism are being misunderstood. “
She added: “I have a huge belief in Cian. I turned to my son to be inspired. I wasn’t inspired by the services.”
Aileen continues to research communication programmes to help her son, stating it is “quite clear” he is an intelligent young man who needs the proper support and a new, best way of expressing this.
She is currently researching a promising new research programme which Cian is responding excellently to. While it is still in the early stages she’s hoping for the best. Meanwhile, Cian continues to inspire his mother and her readers.
‘A Life of Our Own:Learning from Autism’ is published by Liffey Press and available in all good book stores. You can also purchase it on Amazon.
The book will be launched in Buncrana library on Wednesday November 18th at 6.30pm and in Omagh the day before by journalist and author Martina Devlin at 7.30pm. All are welcome.