Tell Me About It: ‘Life in a family with a disability is a never-ending struggle for support’
PROBLEM: My son is 20, non-verbal with autism and intellectual disability. My siblings are long gone and not part of our lives. For a while there was an odd phone call, where I was supposed to listen to their stories and not supposed to complain.
The very first complaint from me left me stonewalled, isolated and excluded. How dare I? Life in a family with a disability is a never-ending struggle for services, help and support. Why is it that kindness and compassion are in such short supply?
I read somewhere that the capacity for kindness is one of the main indicators of wellness? Why are the people with every advantage so self-absorbed? Are families a micro version of the opposition we face looking for services? Is there a widespread feeling opposing people like my son having his rights services and support or do I have a particularly cold and callous family?
ADVICE: Your letter expresses huge isolation and exclusion at all levels for you and your son and it sounds that you are righteously angry and sad at such rejection. It seems as though the personal exclusion by your family is the one that hurts the most but this is also repeated at official levels. To be so excluded and unheard is leaving you feeling outraged at the world but the problem is that this can mean that the people you need the most (family) will avoid you so they don’t have to experience your pain.
You may decide that your family are not worth the effort of perusing as their capacity for kindness is lacking, but the problem is that your sense of rejection does not disappear, even if you blank them from your life.
As you have 20 years’ experience of dealing with services connected to disability and autism, I would not presume to direct you to supports, but there has been a lot of developments in our understanding of this condition in the past two decades. Most of us now have a far greater knowledge of autism spectrum disorders and it is easy for people to find information and skills in this area.
Your family clearly need to develop their knowledge and they will need to be directed by you if this is to happen. Your son is their nephew or grandchild and he has a need for extended family support if he is to live well. The danger is that if you are defensive and angry in your approach to your family, you will not be heard and your judgment that they are cold and callous will be confirmed.
Could you start with one person? Invite someone for a cup of coffee and ask them how they are. If you do this in a genuine way, they will return the question and be interested in how you are. Keep your expectations low and be pleased with small demonstrations of interest from them in your son’s welfare. You will not change 20 years in a day so have a long-term view and exercise patience and forbearance and you might find that the resistance to your situation lessens slowly.
There is a question of your own life and where that is headed. Do you need to develop interests and friends that are purely for you alone? You may have little time as you are caring for someone with great needs but in order to do this well, you need to be well resourced yourself.
As you are so unsupported, you will need back up if you are to extend your life and find connection and trust in other people. You will be better placed to tackle your family-of-origin issues if you are less exhausted and more optimistic about the human race. It can be hard to put your needs first when there is so much to do but your son will benefit from having a parent who is more content.
That you are so angry and resentful of your family shows that you still care for them (it is hard to have the energy to be angry if you do not care) and if this is true, you might think about how to get what you say you want: kindness and compassion. As human beings, we mostly return what is given to us, eg if we offer criticism to someone, we mostly get it back – even in a silent form.
You say you are looking for kindness and hard as this might be for you, offering care to your family and friends is the best option for getting some in return. However, you need self-care first and perhaps some respite for your son might offer you the best chance of achieving this.
(see autismireland.ie for support, advocacy and counselling)