I can still vividly remember the feeling, three years ago, when I stepped out of the paediatrician’s room and back into a world that had changed forever. When I stepped inside, there was still the (remote) chance that our son was not autistic, that a diagnosis would not be made and that, given time, everything would work out the way we had planned it.
When the diagnosis came, and we stepped out into our new world, we were unprepared. Of course, I had thought at length about how things might be, how we would respond and how we would feel, as well as what it meant for my son. What I hadn’t counted on is how utterly isolated I would feel.
Perhaps if we had left with an information pack, a reading list or a leaflet I would have at least had something to (literally) cling onto. A starting point. Instead we left the doctor’s room with our hands as empty as our hopes. No one told us what we should do, who we should talk to or how we should feel. Even with my wife on my arm, I have never felt so utterly alone.
What followed was silence. I went to work but didn’t talk about it. I saw friends but didn’t talk about it. And even though my wife and I were completely consumed by it, we did not share enough of how we were feeling.
Thinking I should be accepting the arrival of autism more readily, I began reading whatever books I could get my hands on. Frequently they were written by people full of positivity, who had turned their ‘journey’ into the most positive of experiences. That didn’t sound like what I was going through.
My wife felt the pain and isolation even before the day our son was diagnosed. She told me: “I would sit at work where colleagues would sit and chat about their three year olds; silly comments that had made them laugh or surprised them. I was unable to join in the conversation. It was like a knife in my heart every day, and I held it together in the office but cried every day driving home.”
Eventually she was able to reach out to other mums in similar circumstances, something that helped her a great deal: “ I have a good friend at work, and she has a child with Asperger’s. I told her and cried to her over coffee in our local cafe. She kept me sane, told me it wasn’t my fault and I couldn’t change it and held my hand. It was a relief to talk to someone who just ‘got it’, no explanations needed. Someone who knew it was one of the worst feelings in the world to be a mum with a child with a disability, and had also asked the question ‘what had we done wrong?’”
In the months after diagnosis, when we felt strong enough, we sought out local support groups. Sometimes it was hard, to look at other children and think ‘will my child be like you? Be disabled like you?’ Some groups worked for us and others ran their course but the one thing that we kept going back for was the chance to talk to other parents. That alone was the thing that kept us going back week after week. We were lucky to meet some friendly people who just accepted us, accepted our son and accepted and understood what it is like to have a child with a disability.
My wife made good friends with one particular mum, they still meet regularly with and without kids for coffee and a natter. This has led to connections with other families and we are hopeful that further friendships may blossom. My wife says: “Without my SEN mumchums I honestly don’t know where I would be. They keep me sane, laugh and cry with me and make me realise I am not alone in my new life as a SEN mum.”
A key factor that has defined life with an autistic son has been the struggle to find understanding. Particularly difficult has been getting people to understand what the implications were for my son and for us as a family. Some people close to us, we realised, will never understand. Even those who desperately want to understand, to help, to try and make it better can never really come close, because it is only when your child has a disability that you can really, truly understand.
The charity Scope recognises and understands this.
I was contacted recently by them, and learnt about their Face 2 Face befrienders scheme. They match parents with disabled children with trained befrienders, with the purpose of helping parents feel less isolated and letting them know that others have gone through the same experiences. The role of befriender is not about ‘fixing’, but listening – and drawing upon a shared experience. The Scope Face 2 Face training develops the skills that are so important in befriending: how to listen without judging, how to empathise, re-stating what the other person has told you to ensure you’ve correctly understood, offering and discussing solutions and acknowledging where formal counselling may be more beneficial.
The purpose of this blog post is help promote and raise awareness of Scope’s Face 2 Face befrienders scheme. Regular readers will know I no longer write weekly posts, but I felt compelled to make an exception by writing this. You can learn more about the work done by Scope here. You can also help out by writing a blog post, using social media and just generally spreading the word. Scope have an information pack for bloggers available from their site.
Three years ago, when our world was falling apart, a helping hand from someone in the same boat would have gone a long way towards getting us through. Please take the time to share the valuable work done by Scope, so that others can get that guidance and support that is so often in short supply for families.