|Tips for Parents|
Before television journalist Geraldo Rivera’s 1972 expose of the horrors of Willowbrook Hospital in Staten Island, New York in which thousands of children and adults with mental and physical disabilities were abused and neglected, the topic of disability was generally not even mentioned. Parents of newly diagnosed children with disabilities were simply advised to place their children in institutions and forget about them. Although society has moved away from this philosophy, the pain and anguish that families of children with disabilities experience still exists.
When parents are faced with the diagnosis of disability at the birth of a child, to manage successfully they must come to terms with the loss of the normal child they had anticipated as well as the accompanying dreams. Discovering that one’s child is disabled is indeed as traumatic as experiencing the death of a beloved family member. Caregivers need to find ways to restore normalcy and dignity to their shattered lives in order to cope with the challenges before them.
Parents of children with disabilities grieve the loss of dreams and expectations of what parenthood has meant to them. Instead of joy at the birth of their child, parents often experience guilt and shame. After having spent nine months preparing for the birth of a healthy child, parents suddenly find themselves shocked, saddened and angered, yet reluctant to express grief because their child is alive. The loss that parents of children with disabilities face differs from other types of loss such as the death of a child, in that there is no actual ceremonial period of mourning to end the grieving process, and that the loss is often intangible as it is tied to dreams.
In order to move forward parents must ultimately accept the reality that their child will likely have differences and thus they must work to obtain the required services and medical care to begin the process of healing. At some point a shift occurs which can be either maladaptive leading to excessive dedication or neglect, or adaptive, in which case parents adjust their parenting as they meet their child’s needs.
When loss appears perpetually visible and unending, there are methods of coping which include:
- Learning to focus on what the child is able to do. Children, no matter how seriously disabled, will in time accomplish something they have never before done, whether transferring an object from one hand to another or showing amusement at a sight or sound.
- Talking about feelings by reaching out to others. This includes family, friends, professionals, and spiritual connections.
- Joining a support group. Over thirty years post-Willowbrook, families have turned into activists. Support groups provide caregivers with an opportunity to share and learn form others thus alleviating the isolation that many experience as a result of having a child who is different from peers.
- Journaling. Although not everyone feels comfortable writing, it is a wonderful way to express feelings of loss and grief. Writing to congressmen and other politicians to ensure that benefits for individuals with disabilities are maintained and improved can be rewarding and empowering.
- Making time for one’s self. Compromising physical and emotional well-being is not beneficial to anyone. It is important to exercise, spend time with friends, participate in groups, classes, or any means of self-expression where the parents’ interests are at the center of the experience.
- Seeking help when needed. This can come from family, friends, community organizations, respite care, health care professionals, the internet, any available and appropriate resource.
- Learning how to redirect focus. One cannot continually catastrophize. Oftentimes parents state that they will never again smile, laugh, or enjoy life. This kind of bleak viewpoint can be challenged with the question, “Of what value will that be to your child?”
- Recognizing problems that may never be experienced. Most children who have severe disabilities often require supervision and assistance. Such supervision often enables the child to take part in pursuits other than many illegal activities undertaken by children without disabilities.
The purpose of this article is to enable families, caregivers, and professionals to understand that when there is life, there is hope and that physical and mental health are not necessarily the sole determinates of happiness. It is helpful to reject negative concepts as the only emotions parents experience and replace those concepts with more positive notions. The experience of what may be perceived as an undesirable life event, whether by accident or illness, can produce growth and positive change in the quality of life and values that families embrace. Most families acknowledge that having a child with disabilities, no matter how severe, brings gifts that are joyously indescribable.