Although it may sound odd, successful parenting of a child born with this disability may well begin with the need to mourn the loss of the more perfect child the parent(s) were hoping for.
Giving birth to a child who is less than ‘perfect’ can be quite a blow to parents. Especially when the disability is conspicuous at birth, as with physical malformations or in infancy or early childhood such as Cerebral Palsy, Autism or Mental Retardation, there is a jolt-factor which all parents need to contend with if they hope to be able to do the best possible parenting job with the child who was actually born
Some conditions with which Mental Retardation is commonly associated with, such as Trisomy 21 (Down Syndrome) can actually be diagnosed before the child is born through a process called Amniocentesis where some fluid is drawn from the embryonic sac and analyzed for genetic disorders.
While we know that all people are capable of learning, growth and change, we also understand that these capabilities are not evenly (no, not ‘fairly’ either) distributed across the population. The circumstances of birth, prenatal conditions and inherited or idiopathic (flukes) biogenetic realities can and do circumscribe much of a person’s potential.
People with Mental Retardation can and do grow and change. However, for many, many years, this has been falsely believed to not be true. Consequently, children so diagnosed were often warehoused in institutions where they were managed rather than educated or trained and expectations for growth, learning and change were negligible.
The modern parent knows more than parents knew in Victorian times, or even in the middle part of the last century. Professionals know more than they once did as well. A child who is developmentally impacted by Mental Retardation is not a fixed, never changing person. S/he can and will learn and grow – but at a different pace and perhaps in different ways that a child not so afflicted.
Having spent about five years working in a large system created to deliver services to persons with Developmental Disabilities (The California Regional Center System) I had hundreds of experiences with families with disabled children. Between myself and my staff, I had knowledge of some thousands of them. The most important thing I learned was that despite their retardation, each and every one of these people is an individual and is most helpfully regarded as such.
There are various degrees of Mental Retardation; Ranging from the mild to the severe. Within each general grouping, growth potentials and trajectories vary but there is ALWAYS the opportunity for some growth, learning and change for everyone.
Any article this brief covering such an important and complex subject needs be an oversimplification of some kind. This article is deliberately so. I have reduced the parenting issues for people who have a child with Mental Retardation to three core issues. Each of them, thoughtfully and successfully addressed, will improve the chances of a satisfying and satisfactory parenting experience.
1) Mourning the child who was NOT born so as to be able to more fully accept the one that you have.
Most expectant parents have an idea about the baby who is on the way. S/he will be adorable, beautiful, loving and highly intelligent. “Anything will be possible for this child to achieve” is a culturally common mantra for expecting parents.
If the reality of the child who is actually born does not fit one or more of those expectations, a sense of loss and disappointment is often experienced. Sometimes, parents even blame themselves for something they had no control over, or feel, depending on their beliefs, that this child has been given them by the Almighty as a challenge, reward or punishment.
In any event, in order to be able to more fully accept the reality of the actual child, the one who was imagined yet not born must be, in a very real sense, mourned. and allowed to pass. Otherwise, the actual present baby will always be experienced as an imperfect disappointment. People, particularly those with Mild Mental Retardation, can be and often are sensitive to this feeling they get from their parents. It accounts, in part, for the high incidence of Depression among those in this higher level of mentally retarded functioning.
2) Having expectations of learning, growth and change and being careful to not involve your child in any program that does not share this belief, and offer appropriate opportunities to learn and grow.
The old ‘sheltered workshop’ model where people with Mental Retardation sit at tables sorting simple items all day and are never challenged or taught to do anything more complex is a professional anachronism.
Parents or other interested people may find a documentary film called “Try Another Way” featuring the work of Clinical Psychologist, Marc Gold, PhD.
Languishing in an expectation-free world (whether at home or in a Day Program) where a lifetime of being infantilized awaits, does absolutely nothing but reinforce old ideas and freezes people where they are rather than helping them advance, to the extent that they are able, developmentally, and
3) Realistically assessing your child’s needs both now and as they grow into adulthood for the most realistically challenging and supportive program and living situation.
This is also a very tough one. Parents of children with Mental Retardation tend to be, understandably, very protective of them. What happens when these ‘children’ become adults? What happens when the parents become too elderly or infirm to provide good care for and supervision of them?
In California, parents with these concerns drove the creation of the Regional Center system which provides a life-time of case management and other services to people diagnosed as being substantially handicapped due to a Developmental Disability – Mental Retardation key among those conditions.
In other states, parents need to plan thoughtfully for the future of their child which may involve living away from the parents’ home even before they are unable to provide care for him or her.
Mourning and acceptance, the belief in continuing human growth and development and realistically attainable and developmentally appropriate program and living planning are the three ‘oversimplified’ core issues facing each and every parent of each and every child born with Mental Retardation.