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Death of a Special Needs Child

The death of any child is a devastating experience and every situation is unique, but there are common experiences that can help people find support in their grief. Those who experience the loss of a special needs child can be especially affected, as not only is their child gone, but often so is a way of living. Parents are totally involved with meeting the needs of that special child throughout his or her lifetime and now, suddenly, that is gone. It can create a crisis of identity and direction that provides another layer to the grief already felt. It is difficult to deal with such grief alone, but by seeking out other parents who have lost a special needs child, you can find the support that can help you through this difficult time of transition.

The Unique Grief of Parents Experiencing the Loss of a Special Needs Child
The death of a special needs child creates another difficult transition. Parents and those close to them experience a time of grief when their child is “diagnosed” as special needs. This grief does not compare to the grief experienced with the loss of a child; however, it is present nonetheless. We learn to deal with it, live through it and move forward, but it never really goes away; it remains as background noise in our busy lives. Many parents of special needs children become their caregivers. This often is a consuming, all-encompassing labor of love that leaves little time for anything else. This becomes our life in many ways, and many times our primary reason for existence. We do not live the same lives as those who do not have special needs children. We adapt and it becomes our new comfort zone; a life centered on that special needs child.

When we are suddenly faced with the loss of that child everything changes. The world truly is turned upside down. It is almost impossible to wrap your mind around the fact your child is gone, and very difficult to imagine what life will now be like without the need to worry about them and care for them. The grief can magnify as many find they feel there is no longer a purpose for them. Yet many who have experienced this loss come to know they still have a purpose and much of it is still tied to their child. Like all grieving parents, parents of special needs children experience grief in their own way. Grieving is not linear, but more circular, with any stage of that circle possible at any time. Parents of special needs children tend to have some similar experiences in grief as well as in life. They can empathize with those newer to this experience and can offer support through a unique understanding of this special kind of loss. They can offer hope through the example of their own transition to this new reality.

Just as your child has transitioned, you need to transition as well. It is not easy and any hand you can figuratively hold along the way will help. No other person can know your personal experience with grief, but they can understand the road you were and are now on. They can guide from their experience and their shared knowledge of the unique experience of having a special needs child. They have felt the loss and can share with you, without prejudice or judgment, and perhaps help you along the way.

Transitions
Those who live with children of special needs are familiar with transition. Having this child in your life requires it. You may have expected a child with totally different needs and a much different path of development. Now you must adjust both your physical reality and your psychological self to deal with this new reality. It can be said you learn to cope with a situation most people never experience or truly understand. To be successful in this transition requires hard emotional work; a veritable restructuring of your life and your expectations. It means you must redefine who you are and what your life will now be. This is a gut wrenching, emotionally difficult exercise. It takes great effort and can be a tiring, if not debilitating experience. But we do it for our children. We learn to live in this new reality and soon it becomes our comfort zone. We also learn that other people who do not share this experience cannot and mostly do not understand our situation, our emotional needs or the way we live. We sooner or later learn to cope with that situation as well and stop expecting others to understand.

When our special needs child dies we are faced with yet another transition. The work, the worry, the often total commitment to that child suddenly ends. The loss is profound and once again we must redefine our life, adjust our psychological self and even our physical reality. We not only live with the loss of a child, we also re-experience the same feelings and debilitating transition we already went through. Many suddenly find that nothing is the same anymore. There are no trips to doctors, therapy, school or day programs, no more special meal preparations or bath times. There is no longer a need to listen in your sleep for that child’s stirring or cough that may signal some distress that needs your attention. Suddenly all this is gone.

Some people would look at that as a good thing, but as parents of these special children we experience it as a grievous loss, a giant hole in our hearts and our lives. For these children, even small accomplishments are major achievements that bring great joy to them and all those close to them. A smile from a special needs child is itself special and can brighten the day and lighten the load of anyone who loves them. With their death, we are robbed of that joy as well. Just as parents who have never lost a child cannot truly understand what it is to have a child die, people who have not lived with a special needs child cannot understand the special loss their death creates for those who have experienced their life.

People will try to empathize but often do the worst thing possible in that effort. This can cause even more pain for a grieving loved one. Just as it is important to seek out support from parents who have experienced the loss of a child when your child dies, so too it is important to find a parent who shares your experience of loving and losing a special needs child. The support you receive from those who share your common experience can make a big difference in your transition. They will understand without your having to struggle with explanations. They can offer their experience as a guide to your own transition and can make this difficult time a little easier. Through this unique support, you may find the ability to remember those times of special accomplishments and that glorious smile that brightened your life when that child was with you. Perhaps it will help you smile again in memory of your child.

Addressing and Embracing Support for Families
The Compassionate Friends welcomes any family experiencing the death of a child. Those suffering the loss of a special needs child are welcome at The Compassionate Friends and are offered the special support of those who like themselves have experienced both the unique life and death of a special needs child. The Compassionate Friends offer an online support group specifically for families who have experienced the passing of a special needs child. Those families are invited to join this online support group and decide if it is a helpful experience for them.

Few of us who have experienced the loss of a child with special needs get through that loss alone. Few who lose a special needs child can transition to their new reality without some help. Accepting the support of others who have already experienced this horrible reality can help ease this transition and help process the grief. Nothing will change your loss nor will it take away the grief, but it can help you through the difficult days ahead and move you along in a more positive direction. We owe it to our departed children to live a good and meaningful life in their honor. It is good to talk to those who know and who understand and offer not judgment, but caring support. Let those who share this journey support you, as you support them, along the way.

This brochure sponsored by the St. Paul, MN Chapter of TCF
in gratitude to David and Colleen Hines
for their help with this brochure, and in memory of their daughter,
Erin Hines, and the other children, grandchildren and siblings of the St. Paul, MN Chapter

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