Psychologist Kenneth Moses has developed theories on the grieving process experienced by parents of children with disabilities.  He describes several common stages in the grief process, although the feelings he describes can come in any order, and parents may experience all or some of them in the course of their own grieving process.   

Loss of the Dream | Denial | Anxiety | Anger
Guilt | Depression | Fear | Adjustment 
Recurring cycle of grief

When parents are expecting a child, they naturally have dreams for that child: what the child will be as he/she grows up, who he/she will look like, how he/she will do in school, etc.  Many times mothers and fathers will not even discuss their own dreams with their partner, although they may assume the partner knows.

When parents grieve, it is the loss of the dream they are grieving.  This process has many pieces, but it always starts with the shock of the information presented.  It is usually followed by denial that the information is correct. 

Denial is a necessary part of grief and should be looked on as helpful.  Many parents do not want to admit they denied that their child has a disability, but in looking back, they can see things they did and said that constituted denial.  Dr. Moses refers to denial as buying time to permit the person to find the internal strength and external support to deal with what has happened.

Dr. Moses refers to four levels of denial as being the most common.

1. Parents may deny that the child is impaired.  “The doctor must be mistaken” is a common response. Some parents seek a second or third opinion.

2. Parent may accept the diagnosis, but deny the permanence of the disability.

3. Parents may accept both the diagnosis and permanence but deny the impact on their lives.

4. Parent may deny feelings.  “Yes…, but there is no point crying over spilt milk.”

Another stage in grieving is panic or anxiety.  When parents realize the changes this child may make in their lives, they may panic.  “What am I going to do?” or “What about his education and future?”  are questions that become important to parents.

Anxiety can be useful because it helps mobilize and channel the energy needed to make the internal and external changes required by the loss.

Parents may feel frustrated, inadequate to deal with the situation, and afraid of the unknown. 

Reactions during grieving are sometimes seen as exaggerated compared to how a person might normally react to a situation.  If a person tends to become angry in any particular situation, he or she might become very angry during the grieving process. 

Parents may show anger at the professional who diagnosed their child, at the biological history or at God for “giving them this burden to carry.”

Most often, however, the irritability and anger are directed at those closest and safest – family members.  Insignificant and minor events suddenly seem important and catastrophic.  Keep in mind that anger may be fueled by feelings of powerlessness, or not feeling in control of the situation.

In many instances, except where there have been insensitive or hurtful interactions with professionals, the anger of the parents is because of a child who did not arrive as they had anticipated or the frustrations of parenting a child with special needs.  This child is going to change their lives and may seem the cause of the loss of their dream.

Guilt is often associated with something we did in our lives.  It makes us think back to everything we perceived as bad that we might have done.  There may be a tendency to judge our own worth and ourselves.

Many times guilt takes the form of questions, such as, “Why me?” or “What did I do to deserve this?”  We question why things exist as they do, who is controlling our lives, and possibly even our belief systems.  Sometimes the answer to these questions is that some things have no explanation.  This is hard sometimes for parents to accept. 

When people are depressed, tears may come frequently; sometimes everyday activities hold no interest.  There may be physical symptoms such as sleeplessness or even illness.  Again, it is normal to feel this sadness; only very long-term signs of depression are cause for concern.

Parents may have many fears.  An underlying fear may be that because the hurt is so great they will never be able to bond with their child or perhaps not with anyone ever again.  Ken Moses writes, “When you permit yourself to risk …permit yourself to have dreams and it doesn’t work, the fear is that the pain will be so great, you’ll never permit yourself to risk hoping, or dreaming, ever again.”  The feeling of fear and the sharing of that fear are ways parents can find the inner strength and courage to begin to love the child they have.

In this phase of the grieving process, parents begin to see the ways their child is like other children.  “Her eyes are blue, just like her father’s,” or “He likes the same foods as my other children.”

In this phase, emotions become less intense and family members can direct more energy to the take and joys of daily living.  The family begins to find delight in their child.  They start to develop new ways of enjoying each other.  Stress can be renewed and escalate at various points but gaining overall balance is the goal.

Parents move in and out of grieving at different stages of their child’s life.  Major events or changes, such as when a child starts an infant or preschool program; when the child reaches school age, puberty or adulthood; when the child leaves the public school system; and when parents retire are all events that may trigger a parent’s grief reactions.  Holidays, a child’s birthday and family gatherings might also make parents revisit the loss of their dreamed-for child again.

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