There is a recognisable journey that families go on when they have a disabled child. In its simplest form, the early years can be challenging, yet shock, anger and denial can evolve into a new acceptance and adaptation of a new life. It may take time, years even, but it is possible.
Once support and education are put in place and like-minded families found, a plateau can be reached where the family take stock, often realising that although life is different there can be a new-found wisdom, expertise and putting things into perspective. Many parents also report increased empathy, patience and tolerance.
The challenges don’t dissipate – transitions to secondary school and adulthood, the uncertainty of puberty and jostling for appropriate services come along. It becomes clearer whether your child will live independently and realising that certain milestones may be very hard to achieve, or not met at all, again challenge a family’s capacity to adapt, grow and accept difference. Miraculously most families do manage this, sanity and relationships mainly still intact. This is a testament to human strength, endurance and capacity to tolerate adversity.
The journey or emotional arc is very finely balanced. We, as parents, know there’ll be hiccups along the way. Having children is never plain sailing. At the moment though, it seems that the odds are stacked against parents making it through to a satisfying and fulfilling place of acceptance. Cuts to services, lack of understanding, long waiting lists. No space or time to acknowledge how daily living takes its toll on our mental well-being and that of our child. There are only so many battles humans can endure before we give into helplessness. Ironically this is when parents most need the state’s support and the damage and costs are higher. With a more co-ordinated support package, including early intervention and signposting for help, the scenario in which many find themselves could be avoided.
The increased battles that parents are having to undertake are seen in recent news: Nascot Lawns, Short Breaks petition to Downing Street, Exclusions review. Parents become activists and will fight for their young. Whilst positive that action is happening, it shouldn’t have to be this way; the role of lobbyist and campaigner added to already over-worked parent-carers. There is the risk of a pyrrhic victory if the toll on the parents’ emotional well-being is too great. As the charity Contact states ‘families want to put their energy into enjoying life with their disabled child rather than fighting the system to get services’. 
 Contact A Family: What makes my family stronger? May 2009
Emotional support for parents of disabled children