While accepting my child's special needs, I found it comforting to understand the emotionality. I am writing this article which is a summary of my experiences and the books that I have read on this subject. I am by no means an expert, but I would have appreciated coming across this as quickly as possible when we first learned of Luke's diagnosis with Tuberous Sclerosis.

My very favorite book that I have read on raising a child with special needs is by Nancy B. Miller titled Nobody's Perfect. Throughout her career, Dr. Miller observed four different stages as a parent accepts a child's disability. The stages she describes are surviving, searching, settling in and separating.

Surviving

Dr. Nancy B. Miller describes the Surviving stage as "what you do to keep going when you are feeling completely helpless". Surviving is a process of reacting and coping that involves a multitude of uncomfortable feelings that may possibly include fear, confusion, uncertainty, exhaustion, mental overload, helplessness, sorrow, grief, guilt and anger.

Learning of your child's diagnosis of Tuberous Sclerosis is very overwhelming. For our family it was new, frightening and included a very uncertain future. Coping is dealing with one problem and facet of life at a time. All of a sudden we were to understand the aspects of Tuberous Sclerosis, deal with a gamut of physicians and specialists, be an expert and advocate for our child in something that we knew very little about. We didn't personally know about EEG's, seizures, medications, CAT Scans, MRI's, hospital admissions, brain tumors, rhabdomyomas, insurance, genetics, learning disabilities, autism, epilepsy, mental impairment and then we were learning about these topics in relation to our own child.

Coping is getting by with what we have and dealing with our struggles. In the surviving phase, a tremendous amount of energy is used to deal with emotionality. There may be frustration in the medical community, friends or family members in their attempt to support you or that things are a little more complicated than initially thought. Understand that your spouse may not respond to this in the same way you may and respect one another's differences. It is interesting that often the first reaction is not to discuss the emotionality between husband and wife. Which is fascinating in that no one could possibly understand better what the other is feeling or relate. Although this stems in the intensity of the feelings and the different emotions that each partner may feel. Overcome this by discussing and accepting one another's feelings.

The reactions of surviving are temporary; below is a brief summary of some feelings and emotions that may be occurring during this phase:

Shock - A disbelief and numbness. Everything seems unreal. Reaction times are slowed, increase or decrease in sleep or eating occurs, judgment is often impaired with an increased risk for accidents and injury. You may feel fatigue, weak or fragile. Your coping is not consistent from day to day.

Grief - You may feel grief over the thought that your child may have obstacles physically that will impair them from growing up with a healthy working body or mind and to be self-sufficient and capable of making their dreams come true. You may grieve over activities that your child may never experience.

Sadness - You may be sad over what your child may not be able to do or have to experience. Sadness is a normal feeling and reaction. You may feel sad about adaptations needed in your life or of not experiencing the "comfortable" anymore.

Depression - Unlike sadness, depression is a chronic state. Dr. Miller says, "When you are sad, you can usually carry out your daily routine through your tears; when you are depressed, you may not even get out of bed."

Fear - You may fear the afflictions or pain your child may face or how this will affect your family. Will your marriage survive or can you do it as a single parent, will the insurance cover, where to find the best healthcare, how to be the best caretaker for your child.

These are just a few of the feelings that someone might have, but we need to realize that our feelings are normal and we will get beyond this. While making time for yourself, spouse, family and child, taking care of the things you need, a healing process will begin. Some of these emotions will reappear from time to time, but one adapts differently going through it a second time as we are more familiar with how to cope.

Searching

Dr. Miller describes two phases of searching an outer searching and an inner searching. The outer searching consists of looking for the best care for your child and learning as much as possible about Tuberous Sclerosis. The inner searching consists of asking questions like "What does this mean to my family?" "Why did this have to happen to my child?" Inner searching is trying to find a comfort and acceptance of the effects of Tuberous Sclerosis on your family.

The outer search gives a sense of confidence as you understand the dynamics of the disorder and find resources to support you. It may leads you to other families that have children with special needs. A search may consist of medical journals, textbooks, the internet, joining NTSA and parent groups, reading magazines and books. Nevertheless this outer search gives us strength. There are different frustrations in this quest as we find questions that can't be answered or feel despair in the answers we receive.

The inner search includes finding the new identity that comes with caring for the needs of your child. How will our family be affected? Will we have more children? How will this affect our job, education and interests? Our friendships and family? It is learning to let go of the things you can't control and moving on to the things you can.

Settling In

Settling in is feeling comfortable with the changes in your family's lives and changing the focus to your regular routine. It is the beginning of looking beyond the disability and focusing on your child as a child. It occurs when the frantic pace lets up and you are more capable to continue in your usual affairs and interests. It is integrating and juggling all the doctor visits, medication administrations and everything else into your daily routine and beginning to feel comfortable with it. It is feeling harmony in your family life as your definition of normal changes. Not feeling panicked and afraid in facing the daily challenges. Things are more predictable rather than constantly a crisis. Understanding that even in the roughest water that a break will come.

Separating

Separating is looking beyond the disability. Instead of focusing on what your child can't do; you are learning new ways to help them learn tasks they are capable of doing. For example: your child may not be able to speak but can learn to use a communication board. Focusing on your child's self-esteem and helping them to develop strengths in other areas while fostering confidence and pride. Learning what your child loves and helping all possible dreams come true. Teaching them everything they are capable of achieving. Isn't that what any parent would do for any child? The achievements may just simply be different. Looking at your child and recognizing and loving their soul rather than focusing on the disability. Being concerned that your family is having fun together and their needs are being met.

The four stages generally occur in order, although one can experience the stages simultaneously. The emotions may also be re-initiated through a new discovery, memory or special event. For instance a child may have a new MRI to discover a giant cell astrocytoma or surgery may be needed to remove a tumor. This would then trigger the surviving and searching phases once again. Surviving in being worried and searching for the appropriate specialists and treatment plans. Although the feelings would be more familiar in contrast to the first time experienced enabling a person to more quickly adapt. This should not be considered regression, but is a natural process that will enable coping mechanisms to be employed to move through the troubled times.

Take each day one step at a time. Focus on what you need to achieve now, instead of what may need to be acheived for years to come. I believe the most difficult aspect of Tuberous Sclerosis is the degree of uncertainty of afflications that a person can expect. Talk to your spouse and family members. Find someone to talk to that has gone through the similar experiences. Focus on positive sources to feel strength. Gather information about Tuberous Sclerosis, your medical community and support network. Maintain a positive attitude - it will make the ride easier. Remember just because your child has Tuberous Sclerosis, does not make him or her any less of a child or less in need of your love and parenting. Accept life the way it is and stay in touch with reality. Remember you are not alone and that nobody is meant to be perfect.

Written by Deanna Runyan a parent of a child with Tuberous Sclerosis.
References: Miller, Nancy B., Nobody's Perfect, 1994.
Simmons, Robin, After the Tears, 1987.
Smith, Patricia McGill, NICHCY, Vol III, No 1, 1993.

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