HANG ON! Navigating the Emotional Roller Coaster of Raising a Child with a Disability

By Melvin J. Miller MA in Special Education M.Ed. in Educational Leadership

Every three minutes, a child is born with a disability. Every three minutes, a parent is tossed upon an emotional roller coaster of raising a child with a disability. The steep climbs and sharp curves of emotions in raising a child with a disability are not something a parent is prepared for. These parents will flounder around in a maelstrom of negative emotions for months or years until they can finally work their way out.

Hang On! Navigating the Emotional Roller Coaster of Raising a Child with a Disability addresses these issues to allow parents to recognize when they are in the grasp of a negative emotion and how to overcome its impact. In doing so, the parent can then move on to the positive emotions that can be experienced in raising their child with a disability. Hang On! first addresses the negative emotions parents of a child with a disability face by

Providing a brief description of twelve negative emotions

Examining the dangers of experiencing each negative emotion

Allowing the parent to recognize if they are experiencing that emotion

Providing ways to leave that negative emotion behind

Hang On! then continues to the fourteen positive emotions a parent can experience in raising a child with a disability by

Providing a brief description of fourteen positive emotions

Examining the benefits derived from each emotion

Providing ways to enhance the experiences of each of these positive emotions

• Language: English
• Publisher: Newman Springs Publishing, Inc.
• Release date: Jan 21, 2021
• ISBN: 9781648019616

Book preview

Chapter 1

The Perfect Child

Excitement and anticipation fill the months prior to the birth of a child. Visits to the obstetrician; decorating the baby’s room with furniture, toys, and cute little fixtures; and purchasing all the items necessary to meet the immediate needs of the newborn are made. Dreaming becomes a constant part of each parent’s life as they fantasize about the child that is about to be born. Is the child going to be a boy or girl? Blue eyes? Brown eyes? Whose side of the family will the baby resemble? Mom’s? Dad’s? Hopefully not like Uncle Edgar.

As time passes, the context of the parent’s dreams of the child begins to take a different path. Instead of just fantasizing of the looks of the child, the parent now starts to dream about deeper and more significant aspects of the child. What type of personality will the baby have? What will the baby be when he or she becomes an adult? What type of college will she attend, and what wonderful things will this child do, and what exotic places is she going to see? Within a short time, a more complex vision of a child emerges, something that is often referred to as a perfect child. This image of the perfect child is a projection of the parent’s hopes, dreams, and aspirations. The parent views this perfect child through the lens of their own personal expectations and dreams. It is a wonderful time filled with great joy.

Along with the dreams and images of the perfect child come fears and worries. The unknowns and the what if’s are very uncomfortable to think about. Will the baby be born healthy? What about complications? How will life change with this new baby? How much will the baby impact the family finances? These are important questions to be asked but too uncomfortable to ponder too long upon. It is easier to slide back into the fantasy and images of the perfect child.

The actual birth of the child merges the fantasy of the perfect child with the real baby. The cries of the infant echo through the birthing room as someone counts all the baby’s fingers and toes making sure that everything is okay. With most births, the hopes and dreams of the expectant parents are fulfilled. It doesn’t really matter how identical the perfect child resembles the actual child. The only importance is that the baby is healthy, vibrant, and real. All seems right with the world.

There are times, though, when one of the best days of a parent’s life turns out to be a devastating shock. There are times when the image of the perfect child and the reality of the actual child are disparately different. Along with the beautiful child comes a disability. The shock is devastating. The parents dreamed of the perfect child but would have been satisfied with a normal child. Now they are confronted with the prospects of raising a child with a disability. The life-changing disruption of having a child is always significant; the loss of the perfect child is devastating. The impact of the lost dreams on the family is a lifelong impact.

The initial loss of the healthy child will be followed by other significant and just as devastating losses that will last a lifetime. There is a loss of a dream or a specific lifestyle. Certain personal and family expectations undoubtedly must be given up or significantly altered. There is a loss of fantasy and the dreams of a specific future. The realization of having a child with a disability is devastating. Life will never be the same.

The birth of a child with a disability is also a blow to the egos of parents. A child is an extension of the parent. Families leave legacies of certain values, behaviors, and actions that often show pride in a family’s name. During pregnancy, these beliefs and ideals are projected onto the vision of the perfect child. These values and beliefs are shattered with the birth of an imperfect child. The parents are unprepared for such a shock and initially have difficulty reconciling the differences between the child who was just born and all the images possessed by the perfect child. It is difficult for the parents to release, to let go of the images of the perfect child.

The parents are now forced to develop a new set of dreams and expectations for the child with the disability. This is often very difficult because most parents do not have any experiences regarding children with disabilities. This is unexplored territory the parents are woefully unprepared for. New questions and concerns begin to emerge as the parents reconfigure the image of their child with a disability. You are forced to explore a different type of life than you originally imagined for your family. Many new questions arise. What type of future exists for your child, for you? What type of health issues are going to be confronted? What capabilities will your child experience and achieve? What is your child going to be incapable of doing? How are you going to be able to cope as a parent? Do you have the skills and knowledge to handle a child with a disability? What if you fail? What if you don’t have what it takes? Where do you go from here? What do you do now?

The infant’s diagnosis of a disability is such a shock to you as the parent that a grieving process begins. In many ways, the perfect child has died along with the dreams and expectations that have been developed over the course of the pregnancy. This death brings grief. The loss of the perfect child is very personal, and each parent experiences this process in a unique way and to a different degree.

In the late 1960s, the psychologist, Elisabeth Kubler-Ross, developed a theory of a grieving process in her ground-breaking book, On Death and Dying. Here, Dr. Kubler-Ross developed the theory that people with terminal illnesses along with their families and friends go through specific stages of grief. These are denial, bargaining, anger, depression, and acceptance.

The grief following the birth of a child with a disability is significantly different from the grief experienced with death. With a child’s disability, the parent grieves the loss involving a child who is very much alive. This type of grief will have no end or closure. The grief experienced by you as a parent of a child with a disability will be an ongoing experience. At times it will be harshly devastating and at other times hardly noticeable—a true challenge to say the least.

The perfect child you believed would be born is gone; there is no perfect child, but there is grief. The roller coaster of emotional ups and downs begins. You are now faced with an uncertain future regarding your child in terms of health, education, quality of life, and attachments to you, the parent. Instead of enjoying your child’s early life, you are now required to adapt to the realization that the child you have is not the child you wanted. Coming to terms with this is extremely difficult.

You may feel a distance between you and your baby with a disability. Yes, you are disappointed; but also, you experience a wide range of underlying negative emotions. You have now stepped onto the emotional roller coaster of having a child with a disability.

Chapter 2

The Devastation of Discovering a Disability

I’m sorry to have to tell you, the doctor says as she tries to avert your eyes, but your child has… The rest of her words disappear in a mist. What did she just say? Something about a disability? A tidal wave of negative emotions rush over you—panic, fear, confusion. It is hard to think. Disability? Is this something that is going to be temporary? Will it last a week, months, years, a lifetime?

Instantly, thoughts of previous experiences with other people with disabilities come to mind. Is this some sort of karma? How did I treat them? Why did I think and say the things I did? Your mind is racing as the doctor continues to talk. You don’t hear. All you can think about is the future of your child. What about school, relationships, family, job, education? Your mind is spinning out of control with random thoughts. Why me? Why my child?

All that you know is that every aspect of your life as it exists now is going to change forever. You will now have to face a world of new experiences and actions. New words are thrown at you—disability, special needs, abnormality, impairment, inability, genetic counseling, therapy, defect, infirmity, weakness. These words you mentioned throughout your life are now words that apply to you, your child, and your world.

Although the child is born with a birth defect, that defect developed long before the baby was born. Most birth defects occur within the first trimester of a pregnancy when the organs of the fetus are developing. Although some defects can be diagnosed through various medical tests, a significant number go undetected and are only discovered at birth or shortly afterward.

Some infants develop normally during the pregnancy process, but due to factors during the birth, injuries can occur that will lead to a disability. Instrument delivery, maternal infections, and anoxia (oxygen starvation) can result in the development of a physical or a mental disability in an infant.

Some birth defects do not become apparent until days, weeks, months, or even years after birth. Some congenital disorders involving internal organs may not be apparent at birth but show symptoms during the first few weeks after birth. Some severe disabilities do not appear until the child is older. Children with these rare disorders appear to be developing normally and then suddenly degenerate physically, psychologically, and emotionally. Rett syndrome appears primarily in normally developing girls until the child is about eighteen months. Childhood disintegrative disorder, a later developing disorder, does not appear in a normally developing child until between three and four years of age. Then within only a few weeks, the child begins a significant regression ultimately leading to death.

Prenatal Sources of Disorders

Disabilities can occur at any time. Some disabilities happen at the time of conception with genetic mutations and various genetic anomalies. Some genetic defects are so rare, like CHARGE syndrome, they occur only in one birth per 8,500–10,000 births. Other defects are relatively more frequent, such as trisomy 21 or Down syndrome. Down syndrome occurs in one per every three hundred births. Additions and deletions to genetic materials occur spontaneously at conception making it impossible to guard against in prevention.

The list of genetic disorders and birth defects is long. Disorders and defects include such names as

Spina bifida

Sickle cell anemia

Cleft palate

Tay-Sachs disease

Cystic fibrosis

Muscular dystrophy

Trisomy 13 (Patau syndrome)

Trisomy 18 (Edwards syndrome)

Trisomy 21 (Down syndrome)

Anencephaly

Hydrocephalus

Amniotic band syndrome

Williams syndrome

There are other prenatal disorders that are not listed or haven’t even been named yet. Other prenatal disorders occur because of sickness, disease, or careless behavior of the mother. These include the following:

Cytomegalovirus

Gonococcal infection

Herpes

Rubella

Syphilis

Toxoplasmosis

Varicella

Parvovirus infection

Zika virus

Radiation

Alcohol

Drugs (prescription and nonprescription)

Smoking

Often health and medical professionals cannot find a specific genetic or disease-linked cause for a child’s disorder so give the title a catchall name like developmental disability undefined. This is often frustrating to parents since the origin of the disorder is unknown. Parents often worry about the possibility of the increased chances of defects in the other children they may have.

Perinatal Causes of Disabilities

Even if the fetus has had a normal development, certain factors during birth can significantly increase the chances of disabilities in the neonate. Appropriate preplanning and proper medical care can decrease the likelihood of disabilities, but still the chances exist that a disability may result during the birth of a child. These conditions include

Premature birth with a gestation period of thirty-six or fewer weeks

Low birth weight

Long labor

Dry labor

Quick labor

Forceps birth

Anoxia

Venereal disease

Postnatal Causes of Disabilities

Even after birth, the risk of a child acquiring a disability remains throughout childhood and the teen years. Accidents and diseases can be a source of some of these disabilities. Some examples of possible causes of brain damage include

Hypoxic ischemic injury

Traumatic brain injury (TBI)

Infections and diseases such as bacterial meningitis

Demyelinating disorders

Toxic metabolic syndromes and intoxications such as heavy metals, alcohol, and drugs

Seizure disorders

Child abuse

Severe and chronic social deprivation

Malnutrition

Degenerative syndromes such as Rett syndrome

Shaken baby syndrome

Learning Disabilities

Learning disabilities are a unique category of disabling conditions. Learning disabilities are not usually diagnosed until a child begins school. Learning disabilities usually impact the academic and cognitive abilities of reading, writing, and math, areas a child is not required to actively participate in until kindergarten or elementary school. Even though a child may demonstrate difficulties with learning, the actual diagnosis of a specific learning disability may not take place for years because the problems may be inaccurately determined to be just a lack of maturity or the child being simply not trying hard enough.

According to some researchers, the diagnosis of learning disabilities is as emotionally devastating to parents as when the child has a disability at birth. Up until the diagnosis, the child has been developing and interacting within his environment as normal. The diagnosis comes as a major shock. Parents are now confronted with the possibility of significant learning difficulties in a major aspect of a child’s life, school. The diagnosis of a learning disability casts a long shadow on the possible success of learning and success in school.

Chapter 3

The Emotional Roller Coaster

Once a disability is discovered, you are forced to take a ticket for a wild and frightening ride you never planned to be on. You find yourself on a platform getting into a roller-coaster car not knowing where it will take you when you discover there are no restraints; there is not a lap bar or seat belt to firmly hold you into place from the twists, turns, ups, and downs you know are ahead of you. Suddenly, the track chain jerks you quickly ahead, and then slowly you start the steep slow ascent up the first hill. You have no idea what is ahead, and you are filled with dread. A glut of negative emotions flood over you such as anger, shock, denial, fear, and many others. As you reach the first peak, you see roller-coaster tracks with steep hills and sharp turns far into the distance, disappearing over the horizon.

You hang on to whatever you can as you plummet at lightning speed down a huge hill. You are unsure of what to do to stop this crazy ride as you encounter more and more negative emotions regarding the disability your child has.

You may scream, cry, hide yourself away from others, and fear the next second of your and your child’s life with a disability. The fear continues as you become exhausted, unsure if you have the strength and fortitude to climb the next hill. You want to get off so badly, but there are no stops, and the ride seems to be endless. Time becomes a blur.

You notice family, close friends, and relatives on other roller-coaster tracks beside you. Their ride is completely different from yours. Some of these people are going slower, while others are speeding along much faster than the rest of the cars. Some are going slower and they are not going as steep or as high as you are. You suddenly realize that everyone is reacting to your child’s disability, but they are reacting in different ways completely.

Such is the life you now have with your child. Everyone’s reaction to the disability is different. You are on different cars on different tracks with a completely different set of ups and downs. You are terrified. You have no clue as to what is ahead of you, yet you have no way of controlling the roller coaster as you continue to maneuver around sharp curves and precipitous hills. Your fear increases.

Soon you realize you are dealing with every negative emotion. One by one you walk through these emotions understanding their purpose