Q. My friend’s son is on the autistic spectrum and is non-verbal. He does use the Pecs communication programme but not with great success. He is aged six. There are two other older brothers, aged seven and nine, who are both very adamant about getting their needs met and they can present with very challenging behaviour. The parents are exhausted from trying to implement the special educational programme at home and sometimes are too weary to be consistent. Do you have any suggestions and advice?
A. While each family is different, in general parenting a child with special needs brings extra challenges and issues. Many research studies report increased stresses and burdens for the parents of children with special needs, such as providing more care and supervision, the demands of special educational programmes and dealing with behaviour problems, as well as personal stress and social isolation.
Such stresses can be particularly acute at certain times, such as on receiving a diagnosis, starting school and adolescence, when the challenges can be at their highest and the differences from other children at their most pronounced.
The families who cope best tend to adopt more active coping strategies, such as tackling the specific problems that arise one by one, as well as seeking support from the appropriate services for both themselves and their children.
Parents often get most from the “parent-led” organisations that put them in touch with real parents who have coped with similar difficulties and thus reduce their sense of isolation. If they have not done so already you should encourage your friends to take up the services provided by organisations such as Irish Autism Action (autismireland.ie), the Irish Association for Autism (autism.ie) or Aspire (aspireireland.ie) to name but a few.
As you have identified in your question, a particular challenge for the parents of children with special needs is managing the needs of siblings. It is very common for parents to get caught up with putting all their time and energy into caring for and managing the needs of the child identified with special needs. This can lead to siblings feeling neglected and acting up in order to gain attention, which can increase stress on the parents.
The challenge is to try and make family life as normal as possible and not to single out any child for special attention. Finding ways of talking to the siblings about their brother’s disability and making sure to include them in an appropriate way is a priority.
In my work as a social worker in a disability setting, one of the most beneficial pieces of work we could do was offer some support to siblings (which was often best done in small groups, through which they could meet other boys and girls coping with similar issues). A small amount of attention in this way could make a big difference and help them understand the disability and their role as a non-disabled child in helping their parents and their brother or sister. Though your friends are putting a great deal of effort into implementing a home education programme, they have to put this in context.
Parenting a child with autism is a marathon not a sprint. It is important to get the balance right between their child’s needs and their own needs (as well as the needs of their whole family). They should seek extra home supports or even respite to help them manage. Preserving their own mental health and sibling relationships is the first priority and, in the long term, best serves the needs of their son with autism.
The second part of your question is really about how you as a friend can support these parents in bringing up their children.
This is an important question, as many parents report an increase in their social isolation when they have a child with special needs. This is in part due to their lack of social time because of the extra care they need to devote to their children, but also due to withdrawal from friends who may be awkward and not know how to offer support, or who may even be inadvertently unhelpful.
Parents of children with special needs frequently report to me that the hardest thing they find socially is unhelpful reactions from other people. These can range from denial that anything is wrong to a judgment that the parents are to blame for their child’s behavioural difficulties (very common with autism which might be a more “invisible” disability).
Equally difficult can be reactions of “pity” from people who can’t see beyond the disability of the child and who focus solely on the “burden” presented by this. Such reactions bring parents down and lead them to avoid the social contact they need.
To be supportive and helpful to your friends, the key is to be present and to listen without judgment. Rather than making an assumption, always tune into how they are feeling about their child at any given time. Give them space to talk about the trials and tribulations of bringing up a child with special needs, as well as making sure to listen to the stories of progress and milestones achieved.
As with any parents, listening to the successes and good times, the breakthroughs and the moments of joy is as important as anything else you could do as a friend.
In addition, many parents of children with special needs value practical support and help from their friends such as babysitting or minding their children, either the child with special needs or their siblings. Of course, to do this takes trust and time to get to know their children and to follow their lead in how to best care for them.
Above all these parents are likely to value a friend who listens to them with an empathetic, non-judgmental ear and who can understand the challenges and also the joys of bringing up a child with special needs.
Dr. John Sharry, Irish Times, 2011. John writes in The Irish Times Health+ every Tuesday.