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States of Grief for Parents of Children with Special Needs
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Daily tasks, demands and challenges continually test a parent’s patience, problem solving skills, and flexibility. Time to recharge, and relax is often in short supply as the responsibilities of parenthood pull for more of our energy. Stress can impact our health and can greatly affect our relationships with partners, friends, and most importantly, our children. If you are a parent of a child with disabilities, stress can be a uniquely pervasive and isolating experience.

Grief& Loss: Internal Contributors to Stress
As parents, we develop hopes and dreams about who our baby will be in the world and how we will be as parents. This process of creating an internal life for our baby and ourselves is a natural part of what all parents go through. We do not expect that our baby will be born with, or develop, a disability or special need; when that happens, much of what we imagined and planned is forever changed.
For parents of children with special needs, feelings of stress are often compounded by a profound sense of grief that results from this loss of one’s initial hopes, dreams and expectations. These feelings can be similar to those experienced when we encounter any other significant loss, such as a death or divorce. Recent research has indicated that parents of children with special needs may even experience feelings and symptoms of traumatic stress, particularly at the time of their child’s diagnosis. These feelings of grief and loss are often experienced but rarely spoken about or shared. Parents may be worried that expressing their feelings of anger, depression or fear may not be welcomed or tolerated by those around them. They may even feel pressure from family and friends to be “strong” or to remain positive, leaving those feelings of grief without a place for expression. It is important for families to understand and talk about these feelings, and to know that what they are feeling is natural.

States of Grief
We typically think of grief as having distinct “states” (Moses, 1987). For parents of children with special needs, grief rarely happens in a predictable or linear fashion. Oftentimes, the sense of loss is on-going and it is very common for parents to re-experience various feelings of grief at many points throughout their child’s development. A parent who may have adjusted expectations for their child’s needs at home may find themselves again experiencing feelings of denial, fear or depression when presented with new challenges their child is facing at school.While these feelings are often difficult to sit with and even harder to talk about, it is important to remember that all of the feeling states associated with grief serve a purpose and help us to cope, manage and mobilize. The feeling states of grief that we all experience following loss are:
                             •Denial •Anxiety • Fear • Guilt • Depression • Anger
Every parent is different, and grief is a uniquely individual process. There is no “right” or “wrong” way to experience grief; however, parents need to have the space to fully experience and express all of these important feelings. Letting go of the hopes and dreams that we originally had, and which no longer serve us, is an exceptionally complicated and complex process. Doing so can help us connect more fully with what is right in front of us, and can enableus to develop and create new hopes, expectations and dreams for ourselves and our family.

Outside Stressors Also Impact Families
Parents also experience stress due to the challenging external realities of raising a child with special needs. Parents often find themselves juggling the daily needs of their family with medical and therapy appointments, teacher meetings and advocating for services. Siblings may experience stress; feeling overlooked or overly relied upon. Financial pressures may develop when parents are unable or choose not to work in order to care for their child, or when families need to pay for services that are not covered by insurance or other agencies.

For many parents, support is limited. Agencies that once provided services have been impacted by state and local budget cuts. Supportive services for families, such as respite care, are being greatly reduced or eliminated. Parents may experience long waitlists or delays in getting the necessary and needed services for their children and for themselves.

Support for Parents of Children with Special Needs

  • Take time for yourself. Carving out time to relax, read, talk to friends, or do whatever else that helps you to nourish yourself cannot be overstated. We cannot care for others unless we also find ways to take care of ourselves. Taking time to rejuvenate and relax will help you respond to daily stressors and be more available to your children and partner
  • Express and share your feelings of grief. Finding a way to share your story with trusted friends, family or professionals will help with feelings of isolation and hopelessness. It will help clear the way for new strengths and gains to be discovered. Additionally, it will help those around you to know and understand your experience so that they may be able to offer support in more effective ways.
  • Seek out Parent and Peer Support Groups. Knowing that others “have been there” can be a very comforting. Many early intervention programs offer groups; they can be specific to parents who have children with particular disabilities, or be more general support groups offering parents a chance to share and to have an hour or so to just sit and relax. For parents in remote areas or for those who have difficulty leaving their home for extended periods of time, the internet offers many “virtual” peer/support groups.
  • Seek out intervention programs or individuals who take a family- or relationship-based approach to serving your child. Working with agencies or individuals who focus on the parent-child relationship, and on how to utilize this relationship to help promote the growth and development of your child, can help you feel included, supported, and confident. Interventionists who employ a relationship-based approach to providing services for your child can help promote your feelings of connection and competence with your child and can reduce stress by providing another forum in which you can discuss your experiences, concerns and feelings.


In my article on stress and mindfulness, I have explored a variety of ways to understand and manage stress that will be useful to all parents, and I encourage you to look at those ideas http://www.abilitypath.org/love-laugh--live/stress-relationships/coping/articles/stress-management-tips.html

Note: Our website, www.abilitypath.org, offers parents the opportunity to connect, chat, share information and gather information about a variety of topics related to special needs and parenting.

Links & Resources
Moses, Ken (1987). The Impact of Childhood Disability: The Parent’s Struggle. WAYS Magazine, Spring. Evanston, IL.
Foley, G. & Hochman, J., Eds. (2006). Mental Health in Early Intervention: Achieving Unity in Principles and Practice. Baltimore: Brooks Publishing.

 
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