Thinking about Tomorrow

I have two boys James (25) and Luke (24). Luke has autism and a learning disability. Both our children define our family. Both are special. Every decision we make with or for each of them, we make with their best interests at the heart.

When Luke was diagnosed with autism and a learning disability at four years old, fear was the emotion I identified with the most. If I am honest the diagnosis when it came was actually a relief, but this was quickly followed by fear of Luke requiring constant care. What would this mean for our future? We had entered a new world and our journey had only just begun! We didn’t choose this path, Luke chose us.

Our journey has been eventful! As a family we were blessed to have excellent support from our family, friends and local services that were there to help us when we needed it. I set about finding out as much information as I could. I benefitted from attending various parents’ courses which enabled me to meet other local parents in similar situations; this was to be a lifeline. It was (and still is) important to be able to share all the ups and downs that life throws at us. The families we met have become close friends and we have drawn on each other’s experiences as our children have grown up. It is always reassuring to know we are not alone.

Luke’s autism manifests through his anxiety and behaviour. He is very sociable but finds it difficult to make friends and needs support to access the local community. He moved to a special school at the age of nine which was to change his life and ours. Slowly but surely things started to settle down and we were able to start enjoying an ordinary life - whatever that may be! Little did we know that the outcomes that Luke was working towards: developing independence, making friends and accessing the local community would soon become embedded in the Children and Families Act 2014. It makes perfect sense to think about Preparing for Adulthood from the earliest point!

As Luke thrived, our fears reduced and we were able to start to talk about the future. Our aspirations for Luke were high. High aspirations are crucial to success. As a family we wanted to promote Luke’s sense of well-being and to support his ongoing learning and independence. We were very privileged that Luke had the opportunity to go on residential trips and experience living away from home during his time at school; the same opportunities as his brother and cousins. It seemed like a natural progression for Luke to move onto a residential college at the age of 19.

It feels like we have been on the preparing for adulthood journey. There have been tears, laughter, diversions and bumps along the way. All of Luke’s lived experience, education and social opportunities have led to where we are today. Luke is now 24 and is a happy and outgoing young man. Despite his autism and learning difficulties, he enjoys life to the full. Luke lives with five other young people in a supported living. As Luke gets older our aspirations for him continue to be high. Looking forward we hope that Luke has opportunities to work, to be independent as possible, and that he will have friends and family around to shower him with love forever.

Thinking about tomorrow for our family has meant changing our outlook on life itself as goals were reviewed, interests changed, dreams redefined (and sometimes lost). The untrodden path may not be an easy one, but the destination is worth it.

Kay Moore