Joanna Griffin is a Chartered Counselling Psychologist who also has her own child with a disability. She runs a website, Affinity Hub which aims to provide emotional support to parents and carers of children with special needs.
“Having a disabled child often means having to deal with additional associated challenges in practical, physical and emotional terms. My own journey into the world of special needs started when my eldest son was born. Unfortunately due to mis-management, poor communication and a blocked theatre when he was delivered he was in a very poor condition and it took 23 minutes to resuscitate him. We were told that he may not smile, walk or talk.
Nine years on he does smile, walk and talk but has many difficulties and different diagnoses caused by the deprivation of oxygen at the time of birth.
Coming to terms with his diagnoses and difficulties has been a long, often painful, road. New challenges have presented themselves along the way and I’ve been struck by what a difference it can make dealing with an understanding and empathic professional, or speaking to a parent who has experienced similar difficulties, particularly to my emotional wellbeing.
From my own personal experience I felt that parent-carers sometimes needed specific emotional support in order to help process their experiences and feelings. This was supported by my previous professional experience, as a Home and School Visitor at Hemihelp, as well as a pilot research study I undertook about other parents’ experiences and emotions. The survey found that 100% of parents reported feeling stressed or anxious about their disabled child. This correlates well with Cerebra’s study into stress in families which led to the excellent booklet ‘Managing Stress for Carers and Families’. In my study parents also reported feeling anger (66%) about their child’s disability and 60% felt depressed or down. There were also feelings of helplessness (52%), guilt (50%) and denial (22%).
Exactly half of respondents reported a negative impact of having a disabled child on their own life, although many indicated that this could change depending on the time and day and they were only given the option to respond as either positive or negative. Over 70% felt there had been a negative impact on siblings and nearly 80% on their relationship with their partner.
On a positive note, many parents reported feelings of pride (74%) and an inner strength or resilience (60%) that helped them get through their experiences. Half of the respondents also reported having a ‘fighting spirit’ (52%) to advocate on behalf of their child.
Psychologists talk about post-traumatic growth and for 80% of respondents it had helped them put life into perspective, grow as a person (70%) and become more tolerant (65%). Many reported increased confidence in their ability to support their child, as they become the expert and, at times, counter the views of certain professionals.
I believe that if parents of a disabled child seek counselling they require someone with specific experience and knowledge to be aware of the many different factors that can have an affect on a parent-carer. This may include: attending numerous appointments, fighting for services and limited resources, needing to ‘grieve’ for the healthy or idealised child one expected to have, lack of sleep, financial concerns, pressures on relationships, worries for the future, the trauma of seeing your child nearly die or undergo invasive procedures and concern for the impact on siblings. These are all difficult things to experience, process and accept alongside the day-to-day looking after a child and remembering that your disabled child is just a child who needs to play, be loved and hugged and learn about the world as any other child does.
Unfortunately trying to find organisations or professionals that can offer emotional support and understand the complex issues connected with having a disabled child, can sometimes be difficult.
In response I have developed a website of emotional support for parents of children with special needs. The website, Affinity Hub, aims to provide a virtual home for parents to realise that they are not alone. There are many other families also going through similar experiences and feeling similar complex emotions. Hopefully by reading about this it can reduce isolation.
The Professional Support section lists organisations that provide emotional support as well as private counsellors, psychotherapists and psychologists that have experience of supporting this specific client group. I am in the process of identifying practitioners across the UK.
The website not only lists many common emotions parents might experience, it also includes quotes from other parents about their experiences and what advice they would give to other parents. There is also a growing list of books and reference material that parents have found helpful.
Although much of this information is available online if a parent were to search for it I hope that by bringing it all under one umbrella it will help parents and reduce the time (very precious to us parents) they have to spend looking.
Please share your views by completing the survey on your experiences as a parent of child with special needs on the home page at www.affinityhub.uk.”