Marie’s brother, Peter, has autism and epilepsy. He is 47 years old and non-verbal. As their parents aged, Marie gradually took on responsibility for Peter and following the death of their parents, Marie now ensures that Peter has the best possible life as a cared-for adult.
I come from a big, close-knit catholic family of five children. My parents were incredibly ‘hands on’ people and went out of their way to give us all masses of attention. So despite the fact that there were five children and not a lot of money, even with Peter’s very significant needs, we still all had plenty of time. I had a close relationship with both my parents.
My parents lived in the same small bungalow throughout their lives. They created a happy home. As the family grew they simply added another small bedroom onto the bungalow. No one could share a room with Peter and survive it!
I have many happy childhood memories. Peter couldn’t go on buses so we had a small minivan and all five of us would cram into the back of it. Peter would be leaping about so the minivan used to sway from side to side as it careered down the lanes. Holidays were days out, always eventful and usually ending with Peter asleep on the parcel shelf - a very simple, traditional 60s-70s family life.
I am making the past all sound very cosy but living with Peter was not easy He has severe learning difficulties and is profoundly autistic, and as a child was truly hyperactive. Somehow all seven of us sat down together to eat every day. I spent entire meals holding on to my cutlery, plate and the tablecloth.
Peter would choose his own space. He loved the garden and preferred to find a corner to spin his ball or gaze at the leaves fluttering on the tree. Peter was seriously active and still, at 47, rarely walks if he can run. He has proprioceptive issues. Peter loves to stand balanced on the top bar of the climbing frame, with his hands in the air, spinning or twiddling a ribbon.
Perhaps it is no surprise that growing up with Peter has had an influence on my career. I have spent many years as a special needs teacher and working with parents of children with special needs. It has taken many years of teaching and maturing for me to be able to use my personal experience in the workplace. It was really only after taking a postgraduate qualification in autism that I understood that you only become an expert in autism by research, reading and learning. Living with Peter gave me an insight into Peter’s life, made me an expert on just one person with autism.
I think I have always thought that there must be a hereditary element to autism, but when a niece was diagnosed with Asperger’s, my husband and I realised we needed to make a difficult decision about creating our own family. We love Peter dearly but decided to create our own family through adoption. This was a difficult decision but my parents were delighted and doted on our two young boys. They believed that we had done the right thing and loved our sons and accepted them instantly.
Peter went to local special schools each day and lived at home throughout his childhood. At 19, Peter was living in residential care locally and still coming home every weekend. Yet when my mum died many years later, he showed no awareness of the loss. I think that for Peter, when you are there you are there, and when you’re gone from sight you are history. I am so glad for this. It protects him from grief but also means that he does not pine for who he can’t see or be with. When I visit Peter there is immediate recognition. He doesn’t know me as a ‘sister’ but I believe he knows he is loved. He is pleased to see me and goes straight for the jelly babies in my handbag. He will sustain some simple interactive play for a few moments but that depends entirely on the day - I could get shoved straight out of the door having just arrived. I take pleasure in his facial expressions. He will follow me from room to room - a sign of trust perhaps.
Peter has epilepsy. I feel he receives good care from the local epilepsy centre who go out of their way to be understanding. Peter is well cared for and nurtured in his care home. The more mature staff seem to be better able to tune into his needs and care for him as an individual. I do feel very protective of Peter, as an adult who is very vulnerable. He is dependent on staff to meet almost all his needs and to ensure he has quality of life. Things to go wrong from time to time but it is the small acts of kindness that matter.
At the end of my parents' lives, they were still thinking of Peter. They pre-paid his funeral expenses and bought a burial plot so he could be buried with them. I bitterly regret not asking them more about what they wanted for Peter in the future. I do everything I can to support Peter and to be an effective advocate for him but I wish I was really sure what they wanted for him in the long term.
Peter has an amazing smile. He makes my heart sing. I would have loved Peter to have been born without autism for him, but for me, I love him just the way he is. My best vision for Peter would be him sitting on his favourite blue sofa with somebody sitting on the floor at his eye level, playing with a hand puppet, and for him to be smiling and engaged.
My father told him on his last visit home that he couldn’t have had a better son. That is how I feel about Peter as a brother, too. He has enriched my life and that is what I am trying to do for him now.