There is a theory that there are five stages of grief – denial, anger, bargaining, depression and acceptance. First introduced by Elizabeth Kubler Ross after working with the terminally ill, the theory is applicable to many situations where someone experiences a loss through events such as bereavement, divorce, job loss or illness. It has even been suggested that parents of special needs children can also experience the cycle of grief though how we proceed through these stages, or whether we experience all of these stages, is a very individual experience.
When I first became aware of grief being associated with having special needs children, I was sceptical. Like a lot of people I associated grief with death but when I started to think about the Kubler Ross model, I started to realise that I had experienced a form of loss, a loss for the life that I imagined I would have when I became a parent. Like most parents I had my hopes and dreams for my children but those hopes and dreams changed forever when I found out that my son and my youngest daughter were on the autism spectrum. All of a sudden we were faced with huge uncertainty about our children’s futures.
My son’s diagnosis was the most difficult one to adjust to. Though we had known for a long time that something was not right, the diagnosis of an autism spectrum disorder still came as a shock. I knew nothing about autism at the time and all I could think about was autism, my son – no way! I felt totally bewildered and for a number of months I couldn’t and wouldn’t discuss my son’s autism. Looking back I realise that not only was I shocked about my son’s diagnosis but I was also in denial. By refusing to talk about my son’s ASD, I was able to ignore the reality that my son had a lifelong condition and pretend that everything was normal even though life was far from normal. Looking back, switching off was my way of coping with life-changing news, something that I went through again when my daughter was diagnosed with asperger syndrome last year. On both occasions I did eventually start to open up to people around me as I adjusted and learnt about my children’s diagnoses but it was a slow and sometimes painful process.
But that wasn’t the end to my emotional roller-coaster of grief, as I call it. I then went through a phase of blame which was the most potentially destructive emotion of all. I started to blame my husband for not listening to me and supporting me. I nearly convinced myself that if he had been a better husband then we would not have waited so long for a diagnosis, my son would not have become unwell and out of school and I would not have become a full-time carer. Angry and resentful I couldn’t help but feel like this. Even during the times that I didn’t blame my husband, I started to question my own mothering. What did I do wrong? Did I look after my pregnant body enough? Did I have the defective gene? Did I play with my son enough, cuddle him enough, talk to him enough? It was a horrible phase but as time went on I realised that we were good enough parents and that really it was no-one’s fault. These things happen.
As the anger and blame started to lift I then started to become more accepting about our situation. I started to realise that though my children were now officially on the spectrum, they hadn’t changed as a result. They were still my wonderful and unique children and I still loved them with all my heart. The only thing that did change was that as I started to learn more about autism I started to re-evaluate my expectations of family life. I realised I couldn’t hold on to these dreams of being a ‘normal’ family anymore (whatever ‘normal’ means) and that I had to embrace a whole new way of living. So instead of mourning the life that I was missing, I decided to focus on the things that I had, notably my family.
However grief has not totally gone away. However hard I try to keep a positive attitude grief still hits me when I least expect it, when I’m doing the most ordinary of tasks and when I am reminded of how my life compares to others. Only the other day I was in a cafe with my son when I turned and asked him to get a straw for his drink, pointing to where the straws where. Even though I repeated my instruction a number of times my son could not understand what I said as he was too fixated on the waitress making our drinks. He just stood there in his own world. I realised the situation was too much for him so I didn’t ask him again and got the straw myself, feeling aware of the curious looks from the people behind us. It may seem trivial to others but its moments like this when I wonder whether my son will ever be able to live independently in the future.
But that’s the way it is. The grief cycle is something I’m still going through which I think I will continue to experience for many years to come but I am learning to accept that this is part of my life as a special needs mum.