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Planning for the Future: Family First

April 30, 2002

The following is our guide, "Planning for the Future: Family First." This guide is only intended to provide you with a basic understanding of the factors involved in coping with disability-related stress and is not intended to replace the opinions or suggestions of professionals.

New Horizons Un-Limited assumes no responsibility in guaranteeing the services, programs or conditions as described. If you are interested in a resource listed below, call or contact the resource to verify the current situation. Carefully evaluate the information we provide and make your own decisions when using this guide.

Planning for the Future: Family First

Disability can happen to anyone at anytime. A developmental disability in a newborn, a paralyzing spinal injury to a teenager, an acquired brain injury to a once independent adult? No matter the disability however, one thing is for certain, you are embarking on a new journey that will bring a wide range of experiences and emotions. There are many paths to choose, some more promising than others. A successful journey is not impossible, however. The key is in how well you prepare for the journey and how well you utilize the resources you have available. The key is perseverance and determination. Before this is possible however, you must first overcome the inevitable "shock" of disability.

There is no question that discovering a family member to have a disability, be it physical, mental / emotional or developmental, is a life altering, if not shattering event for many families. The comfortable sense of "normality" is lost and replaced, momentarily with chaos. In fact, many families may experience feelings of grief and loss, not necessarily over what was, but of what will not be. There may be sadness over lost opportunities and an ideal future. There may also be feelings of frustration, anger or guilt.

Such feelings are normal and can only be dealt with in stages, just as one would deal with the death of a loved one. Before you can successfully plan for your and your family's future, you must first address the emotional stress an event of this magnitude can introduce into your lives. Do not ignore these feelings, as they will only escalate with time.

The Grieving Process: Taking it one step at a time.

While you and your immediate family members may not go through all of these stages, it is important to recognize the stages involved in the grieving process.

Denial and Shock It may be very difficult to grasp the reality of having a child or family member with a disability. You may initially deny the truth until the shock of this discovery subsides. You cannot actively deal with the reality of disability until you accept it and develop active coping strategies.

Anger As you begin to accept the fact that your child or family member has a disability, you will begin to ask "why me, what did I do to deserve this burden?" You may even feel anger towards your family member with a disability or project your anger on to others in your family. It is this stage that requires continued social support and understanding.

Bargaining During this stage you may find yourself offering tradeoffs to a higher power or deity in exchange for the healthy development of your child or family member with a disability.

Guilt This stage is particularly prevalent for those who parented a child with a disability. You will begin to question whether or not your actions may have caused the disability. Or perhaps if actions not taken could have prevented the disability in your child. In this stage you must remember that disability is a natural part of the human experience, disability can happen to anyone at anytime.

Depression When you begin to grasp the reality of disability, you will also begin to grasp the loss of normality, not only for you and your non-disabled family members, but for your family member with a disability as well. While you may never return to your previous sense of "normal," in time you will find a comfortable new "normal."

Loneliness As you go through changes in your social life because of the discovery of disability, you may feel lonely and afraid. It is essential that during this time you reach out to others, particularly your close family and friends.

Acceptance Acceptance does not mean happiness; rather it is the ability to move on, to actively cope with the reality of disability.

Hope Eventually you will find yourself looking positively towards the future. You will begin to identify opportunities of growth for you, your non-disabled family members and your family member with a disability. You will look for ways in which disability can enrich your family's life. In time, happiness will return.

As you and your family learn to accept these feelings of grief and deal with them in a healthy way, you will find that a new sense of "normal" will resurface, enabling you to adjust your life to the needs of your family member with a disability. While grieving will take time, it need not take a toll on your life.

Throughout the grieving process you may develop coping strategies. Such strategies will help buffer the strain your family may experience while caring and planning for a family member with a disability, in that they will provide an outlet for feelings and a sense of relief.

Family Coping

A family's ability to return to a greater sense of normality will rely heavily upon the ways in which the family relies upon personal and community resources as well as the social support sought and received.

Above all, it is essential to maintain, if not expand social ties and to develop a support network. Social support will lead to positive attitudes and behaviors, fostering a mutual understanding and perhaps encouraging greater opportunity for your family member with a disability. Throughout the planning process you must be mindful of your behaviors. Following are a few things to keep in mind:

DO NOT isolate yourself from your established social network or your community.

DO NOT only socialize with those sharing your experience of disability.

DO NOT fall victim to the typical misconceptions of disability.

DO educate yourself, your family and community on disability.

DO encourage immediate family members to continue normal social activities.

DO maintain, if not expand intimate relationships and friendships.

DO organize or participate in local peer support groups.

DO immediately identify all sources of support (informal - family members and friends, formal - professionals, disability agencies, programs and organizations).

DO immediately develop a support network, including both formal and informal support.

While it is very important to maintain and identify social and community support, it is also essential that you and your family adapt your behaviors and actions to the newly found sense of normal, which now includes caring and planning for a family member with a disability. There is no denying that successful life transitions will require lifestyle changes on the part of immediate family members. The easier you and your family make the transition to this new sense of normal, the easier it will be to help plan for the future of your family member with a disability.

The ease of this transition will vary from family to family and will greatly depend upon the resilience of the family unit. Following are a few factors that lead to resilience in the family unit:

It is easy to disregard the importance of family unity during stressful events. However, if you immediately engage your family in the planning process, you may find less resistance and a much greater level of support. To begin this engagement you should first introduce the notion of disability to each family member who will be directly impacted by the disability, particularly to young children. As they begin to understand disability, they will better understand how it will impact their lives, thereby better preparing them for future role flexibility. Of course this will require an understanding on your part as well. To ensure that your family clearly understands disability, you may want to seek educational counseling from a trusted professional, such as a social worker, rehabilitation counselor or psychologist.

Another excellent educational resource is the local or national disability-specific organization that relates to your family member's disability. Organizations such as United Cerebral Palsy or the National Spinal Cord Injury Association, among many others, will offer comprehensive information on the particular disability and will further serve as an excellent source of information on support available in your local community.

There are also many resources available online. You may want to start your search for resources and information on the New Horizons Un-Limited Inc. website. We offer a tremendous amount of disability-specific information and links to many helpful resources. You may also want to visit Untangling the Web. This website offers hundreds of links to helpful disability-related websites and organizations.

An equally important factor to keep in mind is the encouragement of open communication. Encourage the expression of emotions and feelings. Schedule active sharing and listening sessions in which each family member can share his / her thoughts. Make a conscious effort to listen actively. Regular sharing will greatly reduce inner stress and will ultimately lead to a greater bond and understanding among family members.

If you and your family members find communication difficult, you may want to seek relationship counseling. Such counseling may help family members come to terms with their emotions and feelings, thereby facilitating an open discussion on the experience of disability. Such a discussion will not only bring about understanding but also tolerance. Professional counseling can also assist families in devising a strategy that will encourage involvement in regular family activities that can strengthen the family bond.

Even the most resilient families, however will experience stress in dealing with disability. While stress is a normal occurrence for all of us, it can be particularly damaging to a family affected by disability. Chronic stress, left unattended, can lead to a crisis, only compounding the affects of disability with individual stress levels.

Only you can prevent stress from taking over. It is essential that you and your family are mindful of uncharacteristic behaviors. Many times, out of the ordinary behaviors are often the first sign of stress. Following are a few behaviors that may be signs of stress:

Physical Stress Signs

Alcohol Abuse
Chronic Headaches
Lack of Energy
Screaming / Yelling

Mental Stress Signs

Poor Logic
Slow Thinking

Families that best deal with stress often have an active stress-reducing strategy, using both short-term and long-term stress-reducing tactics. Short-term stress-reducing tactics are those daily activities that remove you from a stressful situation and put you at ease, almost immediately.

Some short-term activities that you may want to consider are: Exercise, Deep Breathing, Meditation, Reading, Writing, Drawing, and / or Talking / Sharing. While these activities may not necessarily offer long-term solutions to dealing with stress, they will provide you with a much-needed escape from the daily routine.

Long-term stress-reducing tactics are those activities, if done for long-periods of time, can reduce current stress levels while also reducing the chances of future stress. Such tactics are often proactive, calling for involvement in activities outside of your family home.

Some long-term activities that you may want to consider are: counseling, peer support, networking, advocacy, and / or self-determination skills training. These activities will not only connect you with the resources to combat your high stress level, but will also assist you in developing an active planning strategy for your family member with a disability, providing you with insight into the many resources available to families dealing with disability.

No matter which tactics you choose, always keep in mind that stress is best dealt with in numbers. Seek support and advice from those who have similar experiences, share your concerns with others and encourage your family to do the same. You must be active in controlling your stress levels. Determine the strategies that work best for you and master them.

Care for the Caregiver

As mentioned above, stress, if not dealt with in a healthy manner, can lead to a crisis. If you are the primary caregiver of your family member with a disability, this crisis could come in the form of caregiver burnout. Caregiver burnout, as defined by WebMD, is "a state of physical, emotional and mental exhaustion that may be accompanied by a change in attitude - from positive and caring to negative and unconcerned." Many caregivers, so consumed with their role as caregiver, fail to recognize the signs of burnout.

If you have the following symptoms (as defined by WebMD), you may be experiencing caregiver burnout without even realizing it.

Symptoms of caregiver burnout are similar to those of stress:

One of the main causes of caregiver burnout is the push to meet unrealistic expectations and demands that caregivers place upon themselves. Such expectations are often forced due to the lack of physical and financial resources, which are often times not easily correctable. Other times, they may be due to the simple reason that the caregiver feels sole responsibility for the wellbeing, or lack thereof, of their loved one.

In preventing burnout, you must learn to set realistic expectations of yourself. Realize that you cannot do it alone. This is where family unity really becomes a factor. The better each immediate family member understands their role and feels part of the planning process, the better prepared they will be to fill in as "part-time" caregiver.

Granted, not all families will be equipped with "spare" caregivers. If you do not have an immediate or extended family member you can entrust with the care of your loved one, there is another option for relief: respite care.

Respite care services are available in nearly all areas of the United States. As stated by The ARC of the United States, "respite refers to short term, temporary care provided to people with disabilities in order that their families can take a break from the daily routine of caregiving. This, in turn, can help prevent abuse and neglect, and support family unity (US/GAO, September 1990). Respite care enables families to take vacations, or just a few hours of time off. Respite is often referred to as a gift of time."

To locate a respite care service in your area, contact your state's Department of Health and Human Services, or Social Services. You should also contact your local chapter of The ARC.

Another excellent resource for family members feeling the stress of caring for a loved one with a disability is to become involved in caregiver support groups. Joining a support group will not only provide you with an outlet to share your feelings and emotions, but will also help you identify additional, helpful resources. Most importantly, a support group will lead to collaborative solutions to common problems.

Every community offers support groups, be they in a church hall or offered by a disability-specific organization. If you cannot find a support group, create your own, soliciting involvement from your community. Support groups need not be formal; they need only to foster sharing and learning.

Support groups can even be found online. If you have access to the Internet, one excellent resource is Empowering Caregivers. This website offers an excellent opportunity to converse with others who share similar caregiving experiences.

Another great resource is Tell Us Your Story; an online community offering a discussion forum for stories about disability awareness, rights and inspiration. While it does not necessarily focus on caregiving, it will definitely provide you with a tremendous amount of unique insight into the experience of disability.

Burnout will affect everyone around you, particularly your family member with a disability. It will affect your relationships and will ultimately erode opportunity for your family and loved one with a disability to experience all of life's offerings. If you feel you are experiencing caregiver burnout, take action now to stop its progression.

Moving Forward

No matter how disability has entered into your life, the event will inevitability affect the way in which you and your family live and approach life. While change is inevitable, negative change is not. As with all major life events, your definition of the event will greatly effect the way in which it will affect your life. If you view disability as "manageable," it will be. If you view it as "unmanageable," it will be. While the initial reaction to disability will naturally be one of despair or helplessness, as you and your family begin to understand and perhaps embrace the "experience" of disability, you will naturally find ways to cope more effectively. When you learn to cope, you will learn to proactively plan for the future of your family member with a disability.

This guide has been derived from the following resources:

ARC of the United States

Coping with Disability Related Stress a publication of Florida Developmental Disabilities Council, Inc. (http://fddc.org/)

Disability and the Family Life Cycle (May 1999) by Laura E. Marshak, Milton Seligman, and Fran Prezant
ISBN: 0465016324

WebMD Health

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[Updated April 30, 2002]
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