Diagnosis Part 3 - Grief

GRIEF - Oil Painting by Kim Neil

The loss of a dream, a hope, direction, the loss of peace, the struggle with forgiveness: how do I deal with this? How do I let go? How do I have hope? 
“See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Isaiah 43:19

This painting which I love was painted by a very talented friend, Kim Neil. To purchase this painting or for more information about Kim please visit: https://bluethumb.com.au/kim-neil/Artwork/grief-kim-neil 

Even when I returned home with a firm diagnosis, I began having conflicting conversations with myself in my inner head.

‘They have probably got it wrong. Surely my sweet, loving son is not on the spectrum. He loves to be touched and cuddled. He has a sense of humour and he is so funny.’

'Don’t forget how terrified he becomes on a windy day, and what about that time he completely lost it at the beach? Other kids you know don’t do that!’

‘He participates happily and follows instructions in group activites like gymbaroo and loves swimming.’

‘He does seem to hate loud sounds and the wind terrifies him, surely this demonstrates some sensory processing disorder.’

'He loves going out to the park and has pretty good gross motor skills.'

I was clearly going through the well described stages of grief; Denial, anger, bargaining, depression and finally acceptance. I grieved that my child would have challenges that other children wouldn’t. I grieved that he may not have the social skills to cultivate strong relationships. I grieved that we would have to spend precious family time learning skills most children innately knew how to do, and most importantly I grieved that he may not have the life that I had dreamed for him. Even though we have come a long way since then, there are still occasional moments or situations when these raw emotions of grief recur.

One of the interesting things about diagnosis was comparing the different way in which it affected my dear husband (DH) and I. DH has had a much more pragmatic approach to diagnosis. Although I am sure he experienced some feelings of sorrow, he pretty much jumped from being a bit ambivalent about me seeking assessments to accepting the diagnosis. Although amazingly supportive, his view was that this was a positive step as now we could focus our attention on educating ourselves on what we needed to do to best support J. I remember one evening where I had to ask him to allow me some time to be sad, let me cry and not try to ‘solve’ anything. This was an important process in allowing me to come to terms with what this meant for us long term. 

It would be presumptuous of me to summarise DH’s journey through all of this. Like many couples, we often have very different reactions to our emotions, possibly just by virtue of being of a different sex. What is clear however, is how important the two of us having a united approach towards moving forward has been for us as a couple and a family.

In the months following diagnosis, DH and I started to navigate our new journey. I have always been someone that is happy to seek help when needed and utilise my available resources. The internet provided plenty of reading and I found great comfort in reading about other people’s stories. (I shall post some links of resources I have found useful in a future entry.) Sometimes the stories made me feel guilty as our challenges seemed to pale in significance compared to what others were dealing with. Other times it gave me practical advice and hope for the future. Most importantly, it made me realise that there were and are many others sharing similar journeys and this alone is extremely comforting.

Despite our challenges I feel so lucky. My greatest champions have always been my family. Their unwaivering support and unconditional love in any situation have allowed me to work through any situation. Since going public with this blog I have also had so much support from friends, many of whom have described similar experiences in their own lives and I hope to be able to share some of these stories in the future.