Although the Smiths had eagerly anticipated the birth of their second child, he was born with a widely open cleft lip and palate.  As the Smiths experienced denial, guilt, anger and sadness, the staff remained sensitive to their emotional needs, educating them about the care of their infant, including special feeding methods, before discharge. However, the Smiths’ emotional reactions would not end at discharge, but would continue to evolve as they raised their son.

The Browns were proud of their sons, Tom and Brad. Both born in good health, they developed normally during their early years. Then when Tom, the oldest, was in first grade, learning problems emerged and his teacher recommended testing for learning disabilities. The Browns were disbelieving and felt angry at the suggestion that their son might be learning disabled. As Tom struggled in school, he became more frustrated at home and school. He was angry much of the time, refused to do homework, and said things like, “I’m so stupid.” Distressed by Tom’s frustration, the Browns pursued an educational evaluation for Tom that showed he had an above average intelligence quotient (IQ) with several specific learning disabilities. Rather than being angry with the diagnosis, the Browns were now relieved and eager to address this issue. Over the years, the Browns would intermittently experience sadness, guilt, anger, hope, frustration and empathy about Tom’s learning disabilities.

Families of children with different disabilities or chronic health conditions may experience similar emotions. Therapists can support these parents if they can recognize the parents’ emotional reactions and respond with support, empathy and education.

The World Health Organization defines a disability broadly as an impairment in body structure or function, an activity limitation and/or a participation restriction in society. “Chronic illness/condition” and “disability” are terms that are frequently used interchangeably.¹ The U.S. Department of Health and Human Services Maternal Child Health Bureau uses the term “children with special healthcare needs” to describe children who have or are at risk for developing chronic physical, developmental, behavioral or emotional conditions that require services beyond those usually required by children.

Physical disabilities can result from a congenital physical defect or from a loss of function of a part of the body. Those affecting children include cerebral palsy, cleft lip/palate, congenital blindness, deafness, absence of a limb and spina bifida. Many are noted at birth, but children can acquire physical disabilities from trauma, such as a spinal cord injury, or from illness, such as severe asthma or sickle cell disease.

Developmental disabilities are cognitive, emotional or physically handicapping conditions that emerge in infancy or childhood. These children delay or fail to progress through the normal developmental milestones of childhood. Examples include autism, pervasive developmental disorder, attention deficit hyperactivity disorder (ADHD), and language delays.

Mental/cognitive disabilities include intellectual disabilities (formerly known as mental retardation) and learning disabilities. With intellectual disabilities, children are below age-level expectations in all areas and are classified according to cognitive impairment.² Children with learning disabilities have a discrepancy between measured potential (IQ) and the ability to perform in one or more areas, such as language, reading, writing, mathematics or social skills.

Emotional disabilities are usually first identified in school-aged children and teenagers. Examples include anxiety disorders, depression, post-traumatic stress disorder, and obsessive-compulsive disorder. A child’s behavioral characteristics must be associated with significant dysfunction in order to be diagnosed with a disorder.

Each disability varies in severity. For example, a child with mild cerebral palsy may not be able to use one hand, whereas another with severe cerebral palsy may be unable to walk, talk or eat independently, and may have an intellectual disability, as well. A child with mild learning disabilities may require few changes in the normal curriculum, whereas a child with severe disability may need to be in a self-contained class to learn. Some chronic health conditions are associated with significant physical or developmental disabilities, whereas others are not. The type as well as the severity of disability or health condition may affect how each family member reacts.

The prevalence of disabilities varies with definition. Over seven million affected children and adolescents in the United States received federally funded services in 2005. In school-aged children, the most common childhood disabilities are specific learning disabilities (45.5%), speech or language impairments (18.9%), other health impairments (9.2%), mental retardation (8.9%) and emotional disturbances (7.7%).³ According to a government survey in 2007, 22.3% of children in the United States had at least one chronic health problem and half of these children had a moderate to severe condition, as reported by parents.⁴

The Effect on the Family

Therapists need to be aware of the enormous impact the disability may have on families, including parents, siblings and extended family members. Disability in one family member may affect relationships, regular routines, finances, work and living arrangements, and this is compounded when the family includes more than one disabled child, which can occur with disabilities that have a genetic component.^1,2 These changes may also cause shifts in the dreams and hopes the parents had for the future. Parents of children with chronic conditions often have difficulties with finding appropriate child care, employment and community activities.⁵ The responsibility of parenting a child with special healthcare needs can increase the parents’ risk for depression or other health problems.⁶ But there is a positive side, as well. Positive effects on families can include a broader outlook on life, development of inner strength in family members, and increased family cohesion and connection to communities.¹

From Disbelief to Acceptance

The parents of children with special healthcare needs may progress through a series of stages much like those proposed by Elisabeth Kübler-Ross in her theory of grief, ranging from initial shock to eventual acceptance.⁷ For example, one father wrote in a book that he coauthored, “From the moment we are informed of our child’s disability, we are in what we call grief mode.” He describes the ladder of grief that includes the denial stage, the anger stage, the bargaining with God, and the healing that can occur in the absence of a cure for the disability.⁸ While hope remains a component of all stages, not all parents reach the acceptance stage.

Shock and disbelief: Parents experience an initial stage of shock or disbelief, followed by denial, after receiving a diagnosis of a child’s disability. The degree and length of denial may vary with the type of disability. For example, those parents with children who have subtle disabilities, such as mild intellectual disabilities, learning disabilities or unseen defects, such as a mild heart defect or cataract, may deny their child’s difficulties longer than parents of a child with an obvious physical disability or one confirmed by a genetic test, such as Down syndrome. Parents with less day-to-day involvement with their child, such as working, noncustodial or traveling parents, may also deny the difficulties for a prolonged period of time.⁸ If the child’s disability is not easily identifiable, as in some speech, language or learning problems, the parents may be confused about the behavior of their young child. They may vacillate between denying anything is wrong and searching for a diagnosis to explain the behavior. Parents may alternately acknowledge that their child has a disability and deny the extent of the child’s problems and hope for a minor, transient cause.^9,10 They may concur on many subjects, but have difficulty agreeing on the source of their child’s struggles.

In some instances of complex neurological problems, such as autism, pervasive developmental disorder, ADHD or a speech/language disorder, a specific diagnosis may be very hard to pinpoint in the child’s early years, causing an intense roller coaster of emotions for the family as they alternately deny that a problem exists, grieve the loss of the “perfect” child and search for hope in a new diagnosis.^2,10 Healthcare and educational professionals can help parents through these emotions with gentle education, emotional support and the provision of suggestions for early intervention for helping the child without prematurely labeling the child with a specific diagnosis. In this early phase of identifying a problem in their child, parents may change professional caregivers in an attempt to find a satisfactory answer to their questions about the child, even if the assessment and diagnosis made by the first professional is ultimately correct.^2,10

Developing awareness/accepting reality: Following shock and denial, parents move to a phase of developing awareness, or accepting reality in which they gradually acknowledge the disability.⁸ Parents begin to confront the differences between their child and same-aged peers and/or the child’s siblings. The parents may experience acute pain and sadness if the child’s peers begin to walk, talk, socialize and become toilet-trained, while their offspring lags behind. Parents may feel envious of their friends and their friends’ children as they sense their own responsibilities as parents become more burdensome. Isolation often sets in as friends and relatives may not be able to understand what they are experiencing. Parents may also experience anger at their situation, at others’ lack of understanding and even at the child with disabilities. Guilt (“I shouldn’t have worked those last few months”) or blame (“It’s not from my side of the family!”) may come into play and can continue to surface intermittently.¹¹ Parents may feel helpless, anxious and uncertain about how to best help their child. Fatigue and frustration may emerge as the parents attempt to meet their child’s needs. Despite these struggles, parents may feel hopeful for progress with each new treatment, medication or therapy.

Restitution/normalization: After developing awareness, parents reach an adjustment, or restitution, to having a child with a disability, which can range from a maladaptive to an adaptive response for the family as a whole. A maladaptive response may take two forms. Parents’ feelings of guilt over the disability may lead to an extreme over-dedication to or over-protection of the child and the neglect of other family relationships or personal interests, causing an imbalance in family dynamics. A reverse maladaptive response is the rejection and intolerance of the child. Parent-child interactions may be negative, and parents may see the child’s behavior as purposefully against them. Either maladaptive response can negatively affect marital and sibling relationships.¹¹ Over-dedication or intolerance indicates that the parents need help in coming to terms with the child and integrating the youngster with disabilities into their family life. Peer support groups and counseling can help lead parents to a more adaptive response.

Fortunately, most parents respond naturally in an adaptive way and adjust their parenting. Because the child’s needs are ongoing, complete resolution of feelings of sadness cannot occur.⁹ However, parents continue to seek out ways to meet their child’s physical, emotional, social and educational needs. Finding resources for the child and family in the community is an important task. Sharing information and stories with parents of other children with disabilities is often helpful. As a coping response, parents may “compare downward,”¹² contrasting their child with others who they perceive as having more severe disabilities than their own. This process may help some parents make peace with their own struggles. Parents may also seek spiritual comfort and maintain hope through their places of worship. Friends and family can be other sources of help and support.

Parents who have moved to an adaptive level of restitution or normalization have a more-or-less realistic view of their child, yet they remain hopeful for continued progress. New treatments may be tried in an attempt to enhance the child’s level of functioning. Because success with such interventions varies from case to case, parents may feel very optimistic if success is achieved, or newly disappointed if the attempted intervention fails. As parents gain experience in helping their child with special needs and talk with others facing similar issues, a sense of wisdom is often developed. Parents sometimes describe a greater sense of understanding of people with disabilities and a deeper empathy for those facing such challenges.

Chronic Sorrow

In 1962, Simon Olshansky, a researcher in the rehabilitation field, proposed a theory of chronic sorrow, recognizing the chronic nature of having a child with disabilities and the fluctuating emotions parents may experience as a result.⁹ He described chronic sorrow as a natural response to the tragic fact of having a mentally disabled child. Guilt, shame and anger, as well as joy for the child’s strengths and accomplishments, however modest, are intertwined with sorrow as parents manage the daily care of their child. Parents enjoy having positive interactions with their child and appreciate others, including healthcare professionals, who also interact positively and focus on the child’s strengths. From day to day, the parents remain in a general state of calm with their child, cautiously hopeful for the best possible outcome, periodically readjusting their hopes over time as they evaluate the progress their child is actually making. The intensity of these emotions varies not only over time, but also among different family members and from situation to situation. As a consequence, the parents occasionally may return to denial, which, rather than being abnormal or neurotic, may actually help them cope with their reality.

Other theorists and researchers have built on Olshansky’s proposal of chronic sorrow to describe more fully what parents experience. Chronic sorrow has been reported in parents of children with a variety of special health conditions, including developmental and intellectual disabilities, prematurity, neural tube defects and other chronic illnesses.¹⁰ Unlike time-bound models of grief that have an endpoint of acceptance and adaptation, chronic sorrow is defined as a permanent, ongoing living loss that is progressive, recurring and cyclical.^5,13 Chronic sorrow is a normal grief response and is distinctly different from clinical depression, which is pervasive.⁵ Chronic sorrow is periodic episodes of sadness while coping with caring for a child with special healthcare needs.¹³ The sorrow may be most intense at the time of the initial diagnosis or onset of symptoms, during hospitalizations or illness exacerbations and even during developmental transitions such as adolescence. Intermittently, prior guilt, blame, sadness and anger can recur. These emotions will also often resurface at milestone points in the child’s life, such as when the child enters school, reaches graduation or driving age, or when the parents are confronted with the degree of their child’s disabilities at school reevaluations and conferences.

Transformed Parenting

Transformed parenting, a nursing social process theory, describes the ongoing emotional process parents go through in raising a child with a disability. “Transformed” refers to the changes parents of special-needs children must make in their parenting role to adjust and be effective parents for these children.¹² It’s important to keep in mind that parents are dealing with the day-to-day responsibilities of taking care of their child while they are emotionally adjusting to having a special-needs child.⁵

Two education researchers used the term “transformation” to describe positive changes the parents of special-needs children identified.¹⁴ These positive transformations, which often occurred as a result of the grief parents experienced, included personal growth (more compassion and greater personal strength), relational growth (the bonds of family and friends), and philosophical/spiritual growth (what is important in life).¹⁴

Other researchers have identified key characteristics of how families experience and respond to having a child with a chronic illness or disability. After the initial adjustment to a child’s diagnosis, many families begin to balance the demands related to the child’s condition with the ongoing responsibilities of family life. This process of adaptation is a valued goal by many families and is referred to as normalization. The review of research literature related to chronic childhood conditions has demonstrated a set of common attributes in the process of normalization. During the diagnostic period, the family acknowledges the condition or disability and its potential threat to the family’s lifestyle. The family then adopts a normalcy “lens” that redefines their family life as basically normal. The family engages in parenting behaviors and family routines that are consistent with normalization focusing on normal aspects of the family. The family also develops a treatment plan that minimizes disruption to the family’s life. Finally, the family interacts with others based on a view of the child and family as normal, and likewise, the family expects others to treat the family and child as normal.^11,15

Many families are able to achieve normalization, whereas other families see normalization as an impossible or even inappropriate goal. Families who have difficulty with the normalization process may view their child as being different, feel that the treatment required for their child is burdensome or make the child’s condition the focus of the family’s life. These families may need help to recognize normal aspects of their child and discover family strengths that can be built upon.¹⁶

The Impact of Health Professionals

Therapists may come into contact with parents of children with disabilities at times of intensified emotions, such as during the child’s diagnosis, an illness or trauma. Therapists can help by providing support, empathy and education. An assessment of the developmental progress of the child and the family’s ability to meet the daily needs of the child is important. Additionally, an assessment of stress and the coping strategies of the various family members can help identify the support needs of the family.¹⁷

Health professionals need to develop an equal partnership with parents that fosters collaboration and communication. Parents need to be respected, listened to and given the appropriate information to assist in decision making for their child.^18,19 Therapists can comfort parents by simply acknowledging how difficult it can be to raise and care for a child with special healthcare needs. Recognizing and offering explicit awareness of the extra care parents give their disabled child is appreciated.¹ Using reflection to do this is an appropriate technique. If parents express anger at their situation, responding to the emotion in a nonjudgmental, understanding way may help them more easily share the frustrations they are feeling, which, in turn, may help them feel supported. Recognizing and reinforcing the effective strategies the parents use with their child can raise the parents’ self-confidence. Complimenting a parent who gives visual cues to a language-delayed child is one example. In addition, therapists can acknowledge the personal, relational and spiritual growth the parents have experienced as they effectively care for their child.¹⁴ A recent Swedish study found that parents of children with disabilities reported feeling supported when they were acknowledged as the expert on their child, and they felt that their child was seen as worthy of being helped.²⁰ Parents desire professionals to look at the whole child rather than just focusing only on the child’s deficits.¹⁹

Parents face the challenge of normalizing and meeting the needs of their whole family. A child with disabilities may benefit from unlimited extra attention; physical and occupational therapists may encourage exercises at home, the school may recommend extra academic work or a counselor or therapist may suggest well-coordinated play dates to help social skills. Yet often, the child with disabilities is not the only youngster in the family. Parents may need guidance from healthcare professionals in prioritizing how much to do for their child with special needs, while maintaining a balance within the family. For example, a therapy session for the child with special needs may need to be canceled if another child in the family has a special event at the same time, or respite care for the child with severe disabilities may be necessary for the parents to go out together or for certain family outings. Reassuring parents that it’s acceptable to make these choices may help reduce guilt they may have about their choices. Conversely, families need healthcare providers to understand their need for flexibility in developing treatment plans in order to maintain a normal family life. Additionally, therapists need to be aware that any interventions suggested to parents should fit into the family’s cultural and ethnic practices and beliefs.^5,6

Parents may question their own sorrow or anger when these emotions recur long after the diagnosis of their child. Acknowledging the normalcy of the emotions family members experience over time and among themselves can help parents to gain greater understanding of each other and themselves.

Therapists should be generally knowledgeable about the child’s condition and be able to provide families with accurate information about the disability. Therapists also should keep up-to-date on information about services available to empower parents to better provide for their families.¹⁹ Ensure that children with special healthcare needs have a pediatric healthcare/medical home. The medical home is a concept in which there is a usual source of primary healthcare that is coordinated and family-centered. This will help to prevent unmet healthcare needs and/or needs for family support services.^21,22 Information about the educational rights of children with special needs should be provided so parents can get early educational intervention. Respite care, which has been shown to significantly decrease parental stress levels,²³ or home healthcare information also should be offered. Referrals to other professionals, such as physical, occupational, and speech therapists, counselors, or tutors, may be helpful. If the child has special physical needs, such as a feeding tube or tracheostomy, hands-on instruction and home support are vital. Parents may need financial assistance to manage the needs of their child. Referrals to local support service agencies, medical-lending closets and organizations specific to the child’s disability can lead the parents to low-cost assistance.

A bibliography of appropriate books, articles or websites can also be of help. Support group information, including local phone numbers, meeting dates and newsletters, can be shared. Linking parents with other parents of children with special needs can be an important source of support. Talking with other parents facing similar issues is invaluable, and other parents are often a source of practical information.²⁴ Internet Parent Support Groups have been gaining popularity and are especially helpful for families with limitations in going outside the home for support meetings. Therapists need to be aware of this avenue of support.²⁴ Information should be shared in a way that will not overwhelm the family, and material may need to be provided piece by piece with later follow-up.

Although the job of all parents is difficult, yet rewarding, raising a child with special healthcare needs is even more challenging. By recognizing the adjustments these parents must make, and the emotions they experience, therapists can support and empower them in their role.

Disability/Chronic Condition Information

Allergies and Asthma

• Allergy and Asthma Network Mothers of Asthmatics
  (800) 878-4403
  www.aanma.org

Attention Deficit Hyperactivity Disorder

• CHADD (Children and Adults with Attention Deficit/Hyperactivity Disorder)
  (301) 306-7070
  www.chadd.org
• The National Resource Center on AD/HD: A Program of CHADD
  (800) 233-4050
  www.help4adhd.org

Autism Spectrum Disorders

• Autism Society
  (800) 3AUTISM (328-8476)
  www.autism-society.org
• Autism Speaks
  (888) AUTISM2 (288-4762)
  www.autismspeaks.org
• OASIS @ MAAP
  (219) 662-1311
  www.aspergersyndrome.org

Birth Defects

• March of Dimes
  (888) MODIMES (663-4637)
  www.marchofdimes.com
• National Center on Birth Defects and Developmental Disabilities (NCBDDD)
  (800) CDC-INFO (232-4636)
  www.cdc.gov/ncbddd

Cerebral Palsy

• National Institute of Neurological Disorders and Stroke (NINDS)
  (800) 352-9424
  www.ninds.nih.gov
• United Cerebral Palsy
  (800) 872-5827
  www.ucp.org

Cleft Lip, Cleft Palate, and Craniofacial Deformities

• Cleft Palate Foundation
  (800) 24-CLEFT (242-5338)
  www.cleftline.org
• Wide Smiles: Cleft Lip and Palate Resource
  (209) 942-2812
  www.widesmiles.org

Congenital Heart Defects

• Congenital Heart Information Network (CHIN)
  (609) 822-1572
  www.tchin.org
• Little Hearts
  (866) 435-HOPE (435-4673)
  www.littlehearts.org

Down Syndrome

• National Down Syndrome Congress
  (800) 232-NDSC (232-6372)
  www.ndsccenter.org
• National Down Syndrome Society
  (800) 221-4602
  www.ndss.org

Epilepsy

• Epilepsy Foundation
  (800) 332-1000
  www.efa.org

Head/Spinal Cord Injury

• Brain Injury Association of America
  (800) 444-6443
  www.biausa.org
• The National Spinal Cord Injury Association
  (800) 962-9629
  www.spinalcord.org
• Spina Bifida Association
  (800) 621-3141
  www.spinabifidaassociation.org 

Hearing Impairment

• Alexander Graham Bell Association for the Deaf and Hard of Hearing
  (202) 337-5220
  http://nc.agbell.org/ 
• Laurent Clerc National Deaf Education Center at Gallaudet University
  (202) 651-5051
  http://www.gallaudet.edu/clerc_center.html

Hydrocephalus

• Hydrocephalus Association
  (888) 598-3789
  www.hydroassoc.org
• Pediatric Hydrocephalus Foundation
  (732) 634-1283
  www.hydrocephaluskids.org

Learning Disabilities/Dyslexia

• LD Online
  www.ldonline.org
• Learning Disabilities Association of America
  (412) 341-1515
  www.ldaamerica.org
• National Center for Learning Disabilities
  (888) 575-7373
  www.ncld.org
• The International Dyslexia Association
  (410) 296-0232
  www.interdys.org

Sickle Cell Disease

• Sickle Cell Disease Association of America (SCDAA)
  (800) 421-8453
  http://www.sicklecelldisease.org/

Tourette’s Syndrome

• National Tourette Syndrome Association (TSA)
  (718) 224-2999
  www.tsa-usa.org

Visual Impairment

• American Council of the Blind
  (800) 424-8666
  www.acb.org
• National Association for Parents of Children with Visual Impairments (NAPVI)
  (800) 562-6265
  www.spedex.com/napvi

General Resources

• The Arc (For people with intellectual and developmental disabilities)
  (800) 433-5255
  www.thearc.org
• Child and Family WebGuide
  (617) 627-3355
  www.cfw.tufts.edu
• Children’s Disability List of Support Groups and Listservs
  www.childrensdisabilities.info/speclists.html
• Council for Exceptional Children
  (888) CEC-SPED (232-7733)
  www.cec.sped.org
• Easter Seals Disability Services
  (800) 221-6827
  www.easterseals.com
• Family Voices
  (888) 835-5669
  www.familyvoices.org
• Healthfinder
  www.healthfinder.gov
• National Dissemination Center for Children with Disabilities
  (800) 695-0285
  www.nichcy.org
• National Organization for Rare Disorders
  (800) 999-6673
  www.rarediseases.org
• Parent Technical Assistance Center Network
  (888) 248-0822
  www.taalliance.org

Gannett Education guarantees this educational activity is free from bias.