Jane Raca, whose son James has learning disabilities, autism and challenging behaviour shares her story and explains how you can get involved in research that will help other families.
“When James was little he used to pinch me if he was cross. He couldn’t walk or talk, so his means of communication were limited. The pinching didn’t hurt too much and he developed a graduated system of pinches which even made me rather proud! If he wanted my attention and I was preoccupied, he would pinch lightly. If he was getting agitated and wanted to leave a noisy place, the pressure would increase until I got the message.
As he grew older and stronger, the squeezing inevitably inflicted more damage. I once got him stuck in a doorway in his electric wheelchair and ended up with a black bruise the size of a saucer under my arm. Despite this, I was surprised when one of his social workers confessed to me that she was afraid of him. It had not occurred to me to be frightened. He was my son and I loved him; I knew he wasn’t being malicious. If you can’t walk or talk and you get overwhelmed by crowds, or the tiniest change in routine, there are only so many ways you can say so.
The social worker’s comments made me think though and I realised that although I wasn’t scared, I was on a constant state of high alert, trying to avoid an outburst. I was also worried about James’s brother and sister and felt I had to protect them from him. It wasn’t much fun for them getting into the car with someone who might attack them, or going to the cinema with someone who might bite them if he got anxious. They started refusing to go anywhere with James and becoming quiet and withdrawn.
I wasn’t getting much sleep and the psychological strain of managing James’s moods on a minute by minute basis contributed to my emotional exhaustion. Eventually I had a nervous breakdown. As I was the main carer of James and his two siblings, this had a profound impact on the family. My husband was alarmed at the fact that I seemed to need to sleep for 20 hours out of every 24, and he had to hold the fort at home as well as work. Our marriage was under severe strain. My mother travelled miles to support us every weekend.
What I didn’t know at that time was that what was happening to my family was not unusual. There is now a much greater awareness of the potential challenges of having an autistic child. However, the resources available to help are still woefully inadequate. Now there is an opportunity to improve that. The National Institute for Health and Care Excellence ‘NICE’ has identified that behaviour that challenges is common in children with a learning disability and can have a considerable impact on them and their family members or carers.
For example it is a common reason for residential placements with associated high costs. NICE has recommended that research be carried out into preventing behaviour that challenges from developing in young children with a learning disability. This is important because NICE is an independent body set up to advise the NHS among others. Its role includes providing strong, research based evidence which has the power to persuade governments to formulate or change policy.
Now, The Cerebra Family Research Group based at CEDAR, a research centre headed by Professor Richard Hastings at The University of Warwick, is calling for 1000 families of children with a learning disability to volunteer to take part in a study over time. The study will look at the well-being of family members where a child has a learning disability, not just mothers, but fathers and siblings as well. The study will further the understanding of what it is like to raise a child with a learning disability in the UK and may ultimately lead to greater resources being available for families like ours.
Professor Hastings, who is also Chair of Family Research for the charity Cerebra, says that many studies show that mothers of children with learning disabilities and autism experience more stress from their children’s behaviour problems compared to other children. He says that fathers and siblings also report more psychological problems when a child with learning disabilities or autism has significant behaviour problems. This doesn’t surprise me at all.
If your child is between 4 and 15 years, 11 months old and has learning disabilities (including children with autism or any one of a number of genetic syndromes as well) please consider taking part. It could make a real difference.
To find out more about the study and to complete the online survey please visit the website. If you have any questions please contact the research team by email: firstname.lastname@example.org or telephone: 02476 524 139.”
©Jane Raca 2016, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.