For any families with a child who has a disability, whether it’s a hidden one or not, the effects can be found under 3 types of categories: physical, emotional and financial. Each category has a profound effect on the individual family member but none so more than the parents. I first became interested in this when my own child was diagnosed with dyslexia –one of the hidden disabilities, although why someone wants to call them that is beyond me as they are anything other than hidden.
I suppose becoming a psychologist lead me down the path of looking at the treatment of disabilities but as a parent, I became acutely aware that the child or adult was being treated in isolation. But we the family were being affected by that same disability also just perhaps in different ways. This led me to study those effects by talking to young adults with disabilities that had been through the “system” and parents about this. What I found was what I suspected as a parent, families need to be treated together as a whole and they need support, not isolation. None of this will be news to those of us who have worked with charities to support those with a disability and their families, nor to the families themselves.
What are some of the costs to families?
The financial costs you could say are obvious. Families will sacrifice for their child; they will give up one income because they have to, this will, in turn, led to a much lower income. Nothing new here, but even parents who continue to be able to work will find the increased costs crippling to support their child. Other siblings will do without, parents will do without. The cost of physiotherapy, assessments, special dietary supplies, nursing, extra teaching costs, even outside school activities aimed at giving their child the best chance possible, all add up. These are just a few of the costs involved. My point is it is very expensive to have a child, we all know that, but for a parent to have a disabled child the costs go up even higher. No parent will ever complain, we will always sacrifice for our children.
Most people don’t realise the physical effect having a disabled child has on the family until. Lack of sleep is an obvious one, so what they’re just tired. The lack of sleep will have a huge impact on your physical health and your mental health; it can lead to all sorts of problems such as depression. This can become a vicious cycle because the parent will put off any of those physical costs to them, as they fear for who will look after their child. Other physical costs can come in the form of not eating properly, may be due to the lack of income, lifting and carrying an even bigger child can cause internal damage to joints, muscles etc. There is a huge lack of self-care going on. One cost that you may not realise is the cost of not being able to be there for the other children. The parent’s time can be so consumed by the disabled child that they have to sacrifice time with their other children. Parents will do anything for their children but when you have a disabled child you feel so divided and guilty all the time. This leads me to my next cost to the family.
The emotional effect of having a disabled child can at first a feeling of being very lost. By that I mean you are given diagnoses, sometimes this can feel like relief as you knew something wasn’t right and now you know you were justified in your concerns. But what that’s it, where’s the help, the understanding of what this diagnosis is, what can you do as a parent to help your child? No one tells you if you’re lucky someone will explain what your child’s disability is, but sometimes they forget you’re not medically trained or a psychologist. You don’t understand the terms; they may not have time to explain these to you. You can feel very isolated, alone and left swimming in the deep end of the swimming pool with knowing how to swim. Next will come guilt and sorrow - why me, why my child, what did I do wrong. You can see yourself as being punished. The guilt can stay for a very long time and can expand to include your other children. You spend so much time and money on one child you feel guilty the others are losing out. Your own mental health, as well as physical care, has gone out the window. Self-care, what’s that? As with all parents, their child becomes first and foremost in their minds. You also suffer from grief; you will go through all the stage of grieving because in a way you have lost something – all your dreams you had for your child before their diagnoses. Parents need to process this grief; they need support and information - particularly from other parents who have been there before them. They need to learn what exactly they can do to help their child. They need to feel empowered again and let go of this guilt.
The above a cost are not a complete list there are so many more. Please take time and ask a parent of a disabled child how they feel do they need help or support in any way? They say it takes a village to raise a child, well parents of disabled children need a village to help them, be part of that village.
All of these costs will have a profound effect on the parents, their relationship and the family as a whole. What can they do? Ask for help. There is no shame in asking for help. There are so many wonderful charities that have been set up by parents just like you. They know what you’re going through and they have the information and help you need to feel empowered again.