It may come as a surprise to people who do not have a child with a disability to state that children with disabilities (both physical and intellectual) have too much.
They receive to much attention, too much praise, and rarely experience the negative aspects of life which are so necessary in developing a well-rounded personality.
Those families who do have a child with a disability will know what I am talking about. It is as if the disabled child elicits a protective instinct in all around them, both children and adults. We want to buy them things, tell them how wonderful they are, always ensure they are first or best at whatever they do.
And yet, when we indulge in these benevolent gestures, the reality is that we are getting more out of it than the child. Indeed, too much of this type of kindness is bad for the child.
What handicaps children much more than the inability to dress themselves or count up to 100 is not their limited intellectual capacity but our low expectations of them. We protect them from failure, and perish the thought that they could ever lose a game.
Even the Special Olympics, an organisation for which I have great admiration, denies disabled children the essential life experience of overcoming failure. In many events everyone receives a medal, regardless of where the person came in. The young person subsequently learns that he/she must always win.
So my advice to parents of disabled children is to treat them the same as the other children in the family. As far as possible, the same rules must apply - don't be afraid to say "No". Parents need to be almost more strict with their disabled child, I feel, in order to overcome the general "Ah God love them" attitude the child is likely to encounter throughout his life. Well-meaning but misguided sentiments can mean a disabled child will never reach his or her full potential.
Remember, any of the rules that apply to the effective management of behaviour apply equally to disabled children. Attend to good behaviour, ignore minor misbehaviour, ensure consistency of management with your spouse, and be very clear about the behaviour you expect from your child.
Look no further than Lifeskills: A Positive Approach by Monica MacNamara. She describes how to go about developing skills in the areas of self-care, home, community, interpersonal, leisure and work skills in a systematic and easy-to-follow way.
As a professional working in the field of disability, I must constantly remind myself that I am responsible to a family and not just the person with a disability. While the many positive aspects of having a child with a disability are acknowledged, it must also be recognised that raising a child with special needs requires an inordinate amount of work. Many parents have commented upon the empty accolades about their courage: "I have no choice." However, the extent of the effort involved has caused many parents to buckle under the strain of care. My advice to all parents of disabled children is to recognise that you have needs, too. Do not neglect them. Feelings of stress and being unable to cope are perfectly normal.
Get in touch with other families of disabled children. Share your stories and experiences. In this way you will realise that you are not alone in the roller-coaster of emotion that parents of disabled children go through. Use the professional services in your area to the full. If someone offers to look after your child, accept the offer.
While the needs of parents have been neglected in the past, so too have the needs of siblings. Often a sibling will grow up with feelings of resentment towards the disabled child for the amount of attention lavished on him/her - and of guilt for having these feelings. Give them opportunities to talk about their feelings, keep them informed about the progress of the special-needs child and do not expect siblings to shoulder too much responsibility.
When the children reach their adult years, parents need to make it clear that they do not expect their non-disabled children to take over the caring role, but rather to be part of the team which makes plans for the long term.
It is important, too, that parents make the best use of professionals. Regrettably, parents sometimes feel intimidated by the professionals. Parents need to recognise that they are experts in their own right about their child, and should view their relationship with professionals as a co-operative one. If this is not what you experience when you visit them, there are some steps you can take to improve the situation. Bring somebody with you. Write down the points you want to raise. Ask for assistance from a social worker if you are having trouble accessing a particular specialist or service. Assert yourself and do not be afraid to complain if you are not satisfied.
None of this advice is easy to put into practice, but keep in mind that your child will ultimately benefit if you stand your ground.
In conclusion, some of the richest experiences I have had in my own life have been with disabled children and adults. The courage, the good humour, the accepting nature and the love they have to give is immense. But we should never lose sight of the fact that it takes a phenomenal amount of work on the part of parents and families to bring a person to that point. There are many gaps which remain in the services to disabled people which place unbearable burdens on many families. For a nation which cherishes the right to life, we seem to have forgotten that the commitment did not end at birth.
Dr Mark Harrold is a clinical psychologist.
