Author’s note:

This is a treatise written in the early 1990’s by a father of a child with a disability who expressed his feelings as a member of my parent support group. The reader will see that the feelings haven’t changed all that much except for his choice of words, “handicapped and normal”which are now considered inappropriate. Although many parents have progressed past the intensity of feelings, it is clear in this father’s message how important it is for a parent of a child with special needs to connect with other parents in the same boat, regardless of their disability, to know they are not alone.

No one ever really believes it could happen to them. The birth of a child is supposed to be a glorious event, a wonderful experience, an act of God. But what happens when the unthinkable occurs? What does a parent do when the act of God turns sour and he or she is faced with the cold reality that the child is not perfect… not even normal. You learn your child is handicapped and suddenly your world is not the beautiful, happy, normal affair that you can find on your television commercials depicting idyllic babies going through idyllic batches of disposable diapers, enjoying intimate moments with dad before the new home computer, even punching the keys of a piano with stubby baby fingers. Who ever expects the nightmare that comes with the birth of a less than normal child?

Friends and family may try to help but unless they’ve had a similar experience the good intentions fall far short of the desperate need of the parent for consul in understanding the affliction that has befallen him or her.

And where does that parent go for a guiding light? Where is a haven of understanding that one in such a position so urgently needs? You find yourself in a void somewhere between those wonderful television commercials and the Never Never Land of quietly reserved parking spaces for the handicapped.

You can’t take your child to your friend’s home and chat about how wonderful it is to be a parent while her normal child walks and talks and does everything a normal child is supposed to while your child does just what he or she does. And why don’t your friends understand when you don’t want to bring your child over for a dinner party?The feeling of loneliness settles in, you withdraw into a self-protective shell, all the world is viewed from a behind a protective screen. Can anybody understand? Is there anywhere to turn?

In the western part of Los Angeles, in the foothills of the Santa Monica mountains is the Stephan S. Wise Temple and it’s here at this facility that Gayle Slate directs a group of parents who share the common misfortune of having handicapped children. It’s as exclusive a club as one can imagine. And yet the members of this club appear no different than anyone else. But make no mistake, we are all different. You would not guess by looking that everyone one of us has endured similar experiences with handicapped children. And who would want to belong to this club?

At my first meeting with this group I had few expectations. I was in pain, confused, unhappy, ready for anything. What I found were people who knew exactly what I felt and knew exactly the road I’d traveled to reach this meeting. Everybody had traveled that same road, everyone knew my anxieties, my fears, my unanswered questions. You want to know about seizures, medications, neurologists, opthalmologists? Someone in the group can offer information. You want to know why you can’t laugh like you used to before the baby was born? Someone in the group understands. You can’t find a babysitter? NO one in the group has all the answers but you can be sure that someone knows just what the hell you’re going through.

There aren’t many clubs like this. You’d be hard pressed to find one and membership is on an exclusive basis. But the club exists for those that need it and for those of us who felt so alone it is truly a haven for hope.

I have worked in the field of helping families and their children with special needs for over 38 years and have heard horror stories and hopeful stories, yet most of the people I have worked with have made great strides for themselves and for their families. Even though their experiences were stressful, they were simultaneously strengthening. Parents have told me that having a special needs child provided them with challenges they never believed they could meet. These parents learned they could survive almost anything.

At first, when discovering a child has a disability, parents are unprepared. Parents’ aspirations are shot down as their dreams for their ideal child are momentarily lost. Why us? How we will we survive? How can we handle this? I don’t know what to do for my child with a disability. These are some of the questions that plague them. They are unprepared as we all are when seemingly catastrophic events befall us.  We try to establish some kind of order to not feel lost, trying to make sense out of senseless situations.

Some typical parental feelings at the beginning of the journey:
Feel out of control, guilty, responsible, angry, depressed
Try to make sense of experiences even when no sense can be made
If one looks too far ahead, a person can feel overwhelmed.
Negative scenarios that one plays in their mind may not happen.
Worrying may be for nothing.

Many try to take control or establish some kind of order in their lives by:

A. Hurrying through, or putting aside feelings of grief

B. Denial of feelings

C. Trying to fix the child, to become “normal”

D. Finding or searching for more and better doctors, therapists, teachers, schools, quackery to find the “cure”.

E. When parents seek perfection, most never recognize it. What or who is perfect?

Advice: Rather than feel like failures in not finding the answers, parents need to slow down, and stop the chasing in order to collect their thoughts and allow new creativity to flow. It will happen.

G. Parental reactions have less to do with the degree or type of disability.

H. The primary feelings of grief, powerlessness and guilt are pretty typical at the beginning. Parents initially are very isolated.

I. When feeling alone and sad, other parents of special needs are important conduits for new parents. Ask child’s pediatrician for referrals to other parents

Advice: Keeping a journal about their child from the beginning is critical for parents, and helps them keep their thoughts clear, and is useful for the doctors as well.

“Dana’s Legacy-From Heartbreak to Healing”, covers these and more issues, focusing on strengthening the families of children with special needs, rather than focusing just on the child’s specific disability.

It is a book about helping parents become more effective and building new dreams and seeing the child as a child first who happens to have a disability. It is about changing tragedy to triumph, and appreciating your child beyond the disability.

My body was the first site for my memories and growth. My uncle, an orthopedic doctor noticed my curvature of the spine at ten years old. After many years and hours of physical therapy and exercises to correct the curvature, little progress was made. Therefore I needed 2 spinal surgeries and body casting until my growth stopped, which was at 14 ½. Surgery at 12 years old was the beginning process of my learning unconscious signals from my parents to be brave, and to not let them or me down. Externally, I presented myself as cheerful, light and funny, and as a people pleaser to put my parents at ease. Internally, I almost convinced myself that everything was ok, but was internally fearful, insecure, and unknowing. I talked myself into the fact this was a temporary situation and everything would be resolved, eventually. I was concerned about others’ opinions of me. I was looking for praise. I was utterly terrified of criticism. I was consumed with the outside and had little belief or confidence in myself. I was afraid of failing out of fear of criticism. In actuality, I was my fiercest enemy, yet I learned that I was a real survivor in terms of physical survival. My surgeon admired my courage and used me as an example to other children who were going through the same ordeal.

When disability happens to a child in a family, everyone in that family responds in their own way, with each person trying to hold it together as best they can, some better than others.

Disability initially can wreak havoc on a family, making them feel as if it is the end of their world. They don’t know where to go or what to do. It takes time to get enough information to figure out what to do, and then it may not work right away. In the meantime, marriages suffer,  depression overcomes parents and sibs, but eventually, most families seem to work through this and survive in the most heroic of terms. Disability can wear down the fabric of the family because unlike illness, it doesn’t go away.

So, what is one supposed to do when discovering your child has a disability? Are there any rules to follow?

Quote- Victor Frankl, a psychiatrist who survived through the holocaust, shared  from his experience that “it’s not what has happened to you, it’s what you do about what has happened to you.”

As a mother of a child with a disability and later, as a psychotherapist, I met many families who have had their share of hardships. Some hardships are never ending, but the parents keep moving on despite their difficulties. I can share with you what parents have said to me after going through their experiences. One parent said, “my life is like going down into a dark tunnel and coming up out of the tunnel into the sunlight, not unlike a roller coaster.” Another parent said, “we have to accept that life’s roads are filled with potholes- we didn’t miss this one, but we will miss others.”

These parents are resilient. As Dr. Frankl, they learned what to do about what happened in their lives, and remain thankful that they could help their  children despite their disabilities. These are the heroes, the magnificent survivors.

In Dana’s Legacy-From Heartbreak to Healing, I write about lessons learned from not only my experiences, but from those experiences of other parents, as well.

Professionals are in the position to include parents and help them feel less isolated. A wise pediatrician needs to be sensitive to the entire family’s experience so that he or she can refer the family to the appropriate resources. Sometimes, it is more valuable for a physical therapist to sit and listen to a parent talk than to work exclusively with the child. All too often, professionals stay within their own specialty and feel little responsibility to do more.

When pediatricians, therapists, and teachers walk hand-in-hand with parents and are thoughtful of the entire family’s needs, there will be a sense of true support and the chances of successful treatment for the child will be enhanced. When families are from varying cultures, different from the professional working with them, extra effort is required to understand parental attitudes and cultural differences so communication can be effective and collaboration successful. Collaboration is the key. It is in true collaboration that parents and professionals can develop wonderful goals for the child with a disability. This takes real commitment for the professional to suspend his or her agenda until the parent is fully involved in setting goals that are realistic for both the parents and the child.

Sometimes professionals do not feel that there is enough time to concentrate on families needs. They forget that, by including families in the process, they are empowering the family to become experts in their own realm and within the larger system. In the long run, when parents are fully involved, the care will be more productive.

Parents can act as their own advocates and support others in their efforts to grow and develop. Professionals cannot afford to see parents as illequipped or dysfunctional in parenting their children with disabilities. Instead they must actively enter a partnership with parents. It is the professional that provides a service. It is the parent who makes it work.