AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

A More Positive View of Children with Disabilities

BY H. BARRY WALDMAN, DDS, MPH, PHD, RICK RADER, MD, DHL (HON) AND STEVEN P. PERLMAN, DDS, MSCD, DHL (HON)

"A child with a disability can have some of the same positive effects on their families and make some of the same contributions as any other child." 1 

"When it comes to exploring the experiences of families raising children with disabilities, studies tend to focus on the perceived negative impact of the disability on the family. These families are commonly viewed as 'victims' who face excessive care-giving demands, emotional distress, physical and/or financial burdens and interpersonal difficulties, while the children are portrayed primarily as sources of stress and anguish…These perceptions have a major influence on today's assumptions about – and reactions to – disability, including how professionals respond to children with disabilities and how society views and responds to children at birth." 1

RAISING A CHILD WITH A DISABILITY PROVIDES FAMILY OPPORTUNITIES FOR PERSONAL GROWTH

• Parents report:
• 1. An ability to more readily recognize and appreciate the value, potential, and strengths of a person with a disability.
• 2. A greater acceptance of diversity and stronger belief that there is an inherent and intrinsic value in people.
• 3. For siblings, increased exposure to disability in their family environment made them more comfortable around other children with a disability.
• 4. Family members learned to be more accepting of diversity and of people's behaviors.
• 5. Their child made them a better person, a better parent, or made other family members better people. Some of these effects carried over into their workplace, where they relate to staff and other people in a different way by helping them understand and interpret the behavior of a co-workers with disabilities.
• 6. While having a child with a disability may make some families "fall apart," many parents perceived that their child strengthened their marriage or made the parents and/or family stronger.
• 7. Their experiences are "not all rosy" – that there have been "challenges," "struggles," "obstacles" and "tough times." Yet, parents did not necessarily hold the child responsible for any negative aspects of their experience. Struggles adjusting to their child's disability had less to do with the child than with other people's preconceptions. Any anger, stress, anxiety and/or crises they may have experienced resulted from having to deal with the ignorance of other people and a general lack of societal understanding rather than from the child.
• 8. These findings coincided with those from an earlier study in which parents suggested that the sorrow they experienced originated largely from having to deal with recurring messages of negativity and hopelessness from other people, such as professionals, the health system, other family members, and friends. This suggests a source of stress and negativity outside the child and that a family's perceptions about their child may be determined, at least in part, by the surrounding cultural beliefs about disability.
• 9. If society holds negative attitudes toward disability and the surrounding cultural perceptions are largely negative, negativity can be transmitted to the family – to parents' views of, and beliefs about, their children and to their parenting. 1

One child commented: "Lots of people have the perception that I'm kind of slow… I want them to know that I really do know a lot about the world and what's going on, and it hasn't stopped me – having cerebral palsy, being in a wheelchair – I'm not an unaware person. I have big ambitions and a bright future. I don't want them to feel sorry for me, because I think I'm going to have a really good and interesting and fun life!" 1

CHANGING PERCEPTIONS

"Prior to the twentieth century, social attitudes reflected the view that persons with disabilities were unhealthy, defective and deviant. For centuries, society as a whole treated these people as objects of fear and pity. The prevailing attitude was that such individuals were incapable of participating in or contributing to society and that they must rely on welfare or charitable organizations… Beginning in the late 1800's, institutions were built by state and local administrative agencies to house people with developmental disabilities. These institutions were usually built on the outskirts of town. Societal attitudes fostered this segregating style of management. Unfortunately, segregating from society further stigmatizes people." 2

A multitude of legislative and judicial developments in the 20th century (culmi nating with the Americans with Disabilities Act in 1990) and general perceptions have brought about dramatic changes in societal views of individuals with disabilities. As early as 1991, a Lou Harris poll reported that 98% of individuals questioned believe that all people, regardless of one's ability, should have an opportunity to participate in mainstream society. Furthermore, there was a strong sentiment toward increased employment of persons with disabilities; in fact, 92% of those polled believed that employment of persons with disabilities would be economically beneficial to society. 2

"I thought I would have to teach my child about the world. It turns out I have to teach the world about my child." ~ Cathy, South Africa

SELF-ESTEEM OR HOW WE VIEW OURSELVES

Our perception of ourselves may be more positive or more negative and it is not set in stone. When someone has a healthy or more positive self-esteem, he or she is able to accept themselves "as is." The challenge for a person with a disability may be viewing him or herself as a person first. A disability is only one facet of a person. Thus, for people with disabilities, it's important to allow themselves to view their disability as just one component of their life, not the only component. Another issue for people with disabilities may be dealing with discrimination and stereotyping from society. Thus, people with disabilities might place additional pressure on themselves to try to meet society's impossible standards.

Parents may provide a crucial role in shaping a child's concept of him or herself. Parents also can raise a child to be independent and successful or inadequate, incapable, and inferior. Friends and society also can powerfully influence a person's concept of them self and how their life has been affected. 3

FROM THE PARENT'S PERSPECTIVE

When parents were asked to describe the areas of their life (e.g., marriage, other children, extended family, etc.) that had been affected by their child with a disability, how their life would be different without their child, what pleases (and displeases) them about their child, they identified their children as either sources of, or reasons for:

• 1. Increased happiness
• 2. Greater love
• 3. Strengthened family ties
• 4. Strengthened religious faith
• 5. Expanded social network
• 6. Greater pride and accomplishment
• 7. Greater knowledge about disabilities
• 8. Learning not to take things for granted
• 9. Learning tolerance and sensitivity
• 10. Learning to be patient
• 11. Expanding career development
• 12. Increased personal growth
• 13. Assuming personal control
• 14. Living life more slowly 4

HELPING YOUR CHILD TO DEVELOP POSITIVE SELF-ESTEEM

It's not always easy to see the strengths of your child with disabilities. "A child with special needs perceives the world in their own manner, which can cause frustration and anxiety when they realize their limitations, or don't get the results they want to achieve. This can lead to a child acting up out of anger, or create low-self-esteem. Children who are consistently forced to be an active participant in a game with our rules become despondent or develop an 'I can't' attitude, and understandably so. We need to teach children in a manner or language that they can understand with their unique abilities…" 5

• • Watch your child interacting with other children in different settings, like at home, child care, kindergarten or school. Ask yourself, "What kinds of things does my child enjoy doing with others?"
• • Pay particular attention to how your child relates to others, including you. Look out for things at which your child is good. It might be sharing or taking turns or waiting.
• • Notice when your child follows your instructions well, or does things without you having to ask. In younger children, this might be putting toys away and helping to dress themselves. In older children and teenagers, it might be making the bed and helping to put the laundry away. You can look at these things as your child's personal strengths. 6

YOU PROBABLY HAVE EXPERIENCED, HEARD OR READ VARIATIONS ON THESE THOUGHTS BEFORE; ESPECIALLY THE DIFFICULTIES

• • Parents of kids with special needs will inevitably resent their child at some point.
• • The moods of the parents of kids with special needs suffer in a major way because the daily home environment is so demanding.
• • Children with special emotional needs often don't learn self-sufficiency skills the way other children do.
• • You get angry and unleash your frustration on people who don't deserve it.
• • Your romantic relationship – if you even have time for one – will suffer severe bruises.
• • You figure out who your real friends are quickly.
• • Your memory seems noticeably impaired at times, and you get sicker more frequently, too.
• • You spend a lot of time feeling confused as you try to understand your child. 7

THE BOTTOM LINE

Yes, there are positive and negative realities for a child with disabilities, their family, friends, classmates, and eventually their employers. But always remember that these difficulties are not intentional on the part of the child, the teenager, and the adult with disabilities. Indeed, they are only children growing up.

"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that they are exactly the person they are supposed to be and that, if you're lucky, they just might be the teacher who turns you into the person you are supposed to be." – Joan Ryan 8•

ABOUT THE AUTHORS:

• H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor, Department of General Dentistry, Stony Brook University, NY. E-mail: h.waldman@stonybrook.edu
• Rick Rader, MD, DHL (Hon) is the Director of Morton J. Kent Habilitation Center, Orange Groove, Chattanooga, TN, Senior VP Public Policy, American Academy of Developmental Medicine and Dentistry; Adjunct Professor, Human Development, University of Tennessee-Chattanooga. He is Exceptional Parent Magazine's Editor in Chief.
• Steven P. Perlman, DDS, MScD, DHL (Hon) is the Global Clinical Director and founder, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine.

References

• 1. Lodewyks MR. Strength in diversity: Positive impacts of children with disabilities Available from: vanierinstitute.ca/children-disability-positive-impacts-children-family Accessed January 17, 2020.
• 2. Paul Burtner College of Dentistry. Society's attitude toward people with disabilities. Historical Perspective. Available from: paul-burtner.dental.ufl.edu/oral-health-care-for-per-sons-with-disabilities/societys-attitude-toward-people-with-disabilities Accessed January 20, 2020.
• 3. Voigt R. Who Me? Self-esteem for people with disabilities. Available from: brainline.org/article/who-me-self-esteem-people-disabilities Accessed January 21, 2020.
• 4. Summers JA, Behr SK, Turnbull AP. Positive adaptation and coping strengths of families who have children with disabilities. Available from: kuscholarworks.ku.edu/bitstream/handle/1808/6253/PPD2_Positive_Adaptation_and_Coping _8_07 Accessed January 22, 2020.
• 5. Dalien, S. 5 Tips For Building Self-Esteem In Children With Special Needs Available from: specialedresource.com/resource-center/5-tips-building-self-esteem-children-special-needs Accessed January 22, 2020.
• 6. The Australian parenting website. Building confidence: children and teenager with autism disorder. Available from: raisingchildren.net.au/autism/behaviour/understanding-behaviour/building-confidence-asd Accessed January 22, 2020.
• 7. Meyers S. Empathy for parents of special needs children: Coping & Help. The demands of having special needs children have a definite effect on parents. Available from: psychologytoday.com/us/blog/insight-is-2020/201310/empathy-parents-special-needs-chil- dren-coping-help Accessed January 22, 2020.
• 8. Ryan J. The Water Giver: The story of a mother, a son, and their second chance. Available from: goodreads.com/quotes/345624-motherhood-is-about-raising-and-celebrating-the-child-you-have Accessed January 29, 2020.