There are so many challenging aspects to raising a child with special needs, from dealing with the many emotions that come with special needs, uncertainties about decisions you make, extensive planning, preparation and thinking; to therapies, appropriate doctors, who to listen to and who not to listen to – it is an overwhelming experience. Mourning the losses is another challenging aspect I have recently started to explore.
With the diagnosis of special needs comes an immediate sense of disbelief and once the diagnosis registers, comes an aspect of trauma. Trauma in having to deal with a child with special needs, the consequences, results and strategies for a way forwards. The strategies and plan forwards is constantly changing and is a consistent part of managing special needs, as the child gets older and develops in some cases and in other cases does not. The trauma of seeing how the world and people close themselves off to your child, the trauma of knowing the life and daily battle that will exist for your child.
As we settle into the trauma of special needs and the process of day-to-day management, mourning the losses also becomes part of the day-to-day life and management. For me the first element I had to learn to mourn was the realisation of how my son’s condition was limiting his scope in life. for a typical example is becoming aware of his learning problems and what this implies to education and his possibilities in life of a career and livelihood, sense of self worth and happiness or the realisation that he needs to be medicated in order to be educated and what the implication of this is on social and incidental learning and of course how much he actually misses out on. There is the constant realisation that my child is limited in more areas than normal and it becomes apparent to all that the world is not his proverbial oyster.
Besides mourning what my child is not and the loss of what he cannot be or do is the sadness at how hard things are for him. Perseverance is a trait we all want our children to have. Perseverance becomes a necessity in a special needs child’s repertoire of skills. They are not going to get things right the first time or even the second. Many of these children do not want to persevere and try again and again.
The impact of autism in my son’s life is huge and it is so disempowering to not be able to help him, or explain things to him in a way that makes it easier or lighter for him to endure. Sadly special needs does not only affect the afflicted child, it affects everyone in the family. The visions of the parent I thought I would be and the fun things I thought we would do as a family are also losses I mourn. I have had to become a real planner, someone who is not spontaneous and have even become an inflexible parent much of the time, making sure all arrangements and environments are suitable for my son. All of this has a large impact on my family, but not as big an impact as the fact that we cannot do certain things as a family due to my son’s difficulties, or the fact that when we go for an outing and everyone is all excited, we often have to cut our trips short due to my son becoming overwhelmed, overloaded, miserable or impossible to manage. It is hard not to see the disappointment and effect on everybody else. We are a family and a cohesive unit. We do not like to do things separately but it becomes very limiting and there are times we have to go our own ways to make it easier. We are not all happy about this and it can be very sore for my husband and me to exclude our ASD son.
I too have had to change the person I was in order to manage a child with special needs. I have gone from being a spontaneous person to a real planner, from being fun to overly responsible and serious. At times I feel like I have lost sight of the person I was or at least in the presence of my special needs child, I am very different. I wish I could be more fun and easier going, but this is not always possible. Our son’s condition has placed constraints on all of us.
Family dreams and plans, personal career prospects, personal dreams have been lost. My husband and I would have loved to have had another child however as reality sets in and you become aware how time consuming, energy consuming and financially challenging special needs can be, these dreams need to change. Although our subsequent two children are neuro-typical the statistical probability of having another child on the autistic spectrum cannot be ignored. According to Time Healthland “with at least one older sibling with autism, the risk of the disorder was 18.7%”
The reality is having a child with special needs affects everyone in the family – it redefines your relationships with your family and you as a person. As with any trauma, it makes you aware of your impotence in so many areas and forces you to change and adapt who you are as a person in order to better survive emotionally and physically, but also so you can be a better parent. You have to reassess your hopes and dreams for yourself, your family and your special needs’ child. It forces you to rewrite your story in ways you could never have imagined. You also have to mourn the losses because if you do not, you will be a shell of a person and will forever have unresolved, unwanted feelings.