Those of you who follow me on social media will already be aware that I lost my sister a couple of weeks ago, meaning my son also lost his aunt. Grief at these times can be unpredictable and hard to cope with for a non autistic adult let alone for an autistic child so despite my own struggles I have endeavoured to give my son the extra support he needs at this time.
My mum died 4 years ago and the family dog the year before that, it may seem strange to lump these things together but to my son they were both equally hard. Actually losing our dog was perhaps harder even, as it was the first time he had lost someone he loved. Research has shown that children losing a much loved pet can be the equivalent of them losing a sibling. On the same day my sister was buried my closest friends dog, another dog my son had a strong bond with, also died, it has been a difficult few years for one so young.
So you can see we have had a lot of practice with dealing with bereavement and I have found a few things that helped and also, the things that haven’t. Here are a few things I feel are important:
Be honest – Don’t try to dress it up and don’t be afraid to have open discussion about what may happen to the person after they die. These discussions have helped my son very much. Children on the spectrum often have high anxiety (and of course this is a massive factor with PDA children and adults) so it is important for them to know why someone has died otherwise they may become extremely anxious that they or family members could be struck down at a moments notice. My sister and my Mum both had cancer so once they were given confirmation of a short life expectancy I told my son the were ill to begin to prepare him.
Offer them the opportunity to say goodbye if they wish to – My son chose to visit his Grandmother in the hospice when she was near her time and he also attended her funeral (he was 7 at the time). It was his choice and I helped him by arranging for my niece to go with him to both so they could support each other.
When my sister got ill on the other hand he chose not to in his words ‘get to know her better and make himself sadder when she died.’ Again I supported him in this choice although he did make her a card and always ask after her, he never chose to visit her again. It astonished me that he chose to go to her funeral which he was very moved by.
Some autistic children and adults may find a funeral too much of a challenging event to attend due to sensory issues or social anxiety, this too should be respected. A child could be offered the opportunity to draw a picture or chose a flower to be placed on the coffin in these cases. In other words respect and support their choices and don’t make them do what you think is right or what is expected, anyone who has grieved will tell you it is never how you expect it to be.
Keep other people who have contact with your child in the loop – It is so important that others understand if there are big things happening at home. If your child attends school then it is particularly important to keep them informed because there are ways that can help support your child and it will help them understand any new or worsening behavioural issues may be a result of this.
Consider a counsellor – If your child attends school and you know a relative is terminally ill then contact the school and request a counsellor asap. It may take some time for one to become available as they often have waiting lists and anyway even if it doesn’t a counsellor can help a child prepare ahead of the expected bereavement. Alternatively you may wish to employ a private counsellor, personally I would say that experience in bereavement with a willingness to listen and understand about autism and pda is more important than experience in autism. Some times I have found that professionals with some knowledge of autism can make assumptions of what an autistic child may or may not be able to deal with or how they will react. This can hamper them in providing the right support, where as someone who is very experienced in something such as bereavement will be able to feel out the reactions of an individual as they go along quite successfully, whether they are autistic or not.
Take care of your own mental health – It is not selfish it is vitally important that you take care of yourself, take time out, have friends to talk to, get fresh air, eat well and get counselling if needed. If you are not taking care of you then you are not in he best place to support your child.
Don’t be afraid to talk with your child about that person or pet – I feel it is important for a child to be able to keep a persons memory alive for themselves and if parents continue to mention the person in everyday conversation it gives the child permission to still talk about that. On the other hand if conversation about he person is always avoided in an attempt to protect the child then they may feel the subject is off limits and lock away their feelings and memories not being able to talk about someone can feel like a second loss.
Support your child to remember the person in their own way – some children may find it helpful to create a memory book or box or have one created for them if pda gets in the way of them doing it for themselves. Or perhaps they may like to eat the persons favourite food or have something of the person’s to remember them by. Things like visiting the grave should not be forced or conversely put off limits as being morbid but should be instead led by the child. Trusting your child to know what they need to do and supporting them to do it will help with acceptance and hopefully nurture a healthy attitude to loss.
Understand grief is an on going process – Grief does not just stop one day nor does it have a set way of playing out for each person be they child or adult. Everyone experiences grief in their own way and it is an ongoing process but if handled and supported well will,over time, dull to a state where a person can miss that person but still be glad to of known them and be happy to remember them. Remember reactions to grief can be very unpredictable and also can often been delayed so changes in behaviour, even up to a year or so after the bereavement, may still be caused by that loss.
Most importantly of all;
Discuss death in everyday conversations. By this I don’t mean frighten the living daylights out of your child by constantly reminding them of our inevitable demise, no, rather I mean do not be afraid to allow your child to explore this area. Exploring the spiritual side of people passing, thinking about how memories and love live on and learning to accept loss as a sad but inevitable part of life is something I feel is often missing from children’s emotional education and the more vulnerable a child is considered to be, often the more protected they are. One conversation that I know really has helped my son come to terms with loss went like this.
My son “The world is a horrible place, it makes us love people and dogs and then it makes them die. This is why I don’t believe in god because if there was a god and he let these things happen then he would be a horrible god who know one would worship.” (Just for the record btw I am agnostic but I encourage my son to look at all forms of religion and philosophy which is an area of interest for him).
Me; “The thing is if no one ever died or went away we would soon take each other for granted, it is the fact that we all understand that we are not around for ever that helps us value each other more. You could say that having death as part of life makes love stronger.”