Initial shock, Disbelief, and Grief Phase
Initially parents describe entering a stage characterised by shock and intense emotions. The expected sequence of events when a child is born or develops has taken an unpredictable turn. Mothers identified the time of their child’s birth or diagnosis as a very difficult time. Phillipa, mother of Alistair who has Autism, explained her situation:
He was banging his head on walls, he was tippy toeing, he was laughing hysterically for no reason. He was very obviously autistic, and I didn’t have a clue in the world ... My journey was one of total shock, loss, and I was just totally grief stricken.
Alana’s son was born prematurely, at 29 weeks’ gestation. Alana described intense feelings about the extent of her child’s disability, and the “early days…the dark days”. Some mothers and fathers describe a ‘chronic sadness’ associated with the early days, or the extent of their child’s disability:
I guess it’s just constant now, as he’s older, it’s a constant sadness to James [husband] and I. James will often say, ‘I’m very sad’…I bury it down deeper, but he will often express he is very sad to see Andrew unable to enjoy the things that we’re able to enjoy.
Sara, the mother of a child with cerebral palsy described the moment that she moved through the initial shock of being told that her only child had severe cerebral palsy:
I also clearly remember, however, the pivotal moment during the first weeks after Amanda’s diagnosis at which I moved beyond my sorrow. One moment I was mired in grief and the next moment I thought: ‘I can’t waste time over the loss of Amanda because Amanda needs her dinner.’ While there have been many emotional highs and lows since that day, and the complexity of her care can often seem overwhelming, the experience of raising my daughter has been both positive and powerful.