AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

BY H. BARRY WALDMAN, DDS, MPH, PHD, JEFFREY SEIVER, DDS AND STEVEN P. PERLMAN, DDS, MSCD, DHL (HON)

"Lowered expectations and over-protection of the individual with a disability can cause lowered self-esteem which can result in a life time of underachievement and failure to reach their full potential. Both lowered expectations and over-protection are forms of discrimination."1

Over-protection and lowered expectations of persons with disabilities may result in several unwanted and unintended consequences which can have lifelong impact. "The prejudicial attitudes of those around a child with a disability often include overt acts of sympathy and pity. This discomfort may cause the person with a disability to be segregated and may exaggerate the sense of inequality." 1

Adolescents with disabilities may not be prepared to make decisions for themselves because of their subjection to low expectations and because they are micromanaged by parents and educators. This negative feedback keeps the individual in an inferior and dependent position, often giving up on him/her self. 3

• • Parents unknowingly cause their child to become powerless by failing to allow the child the opportunities to advocate for their self.
• • Parents who over-protect their children can deprive them of their independence as they transition into adulthood and inadvertently promote dependence on others.
• • Physical disabilities significantly impact development of the child's personality in that they may lack a sense of belonging. • Parents who over-protect the child with a disability will continue to over- protect as the child enters adolescence and young adulthood.
• • Another consequence of over-protection may be hostility of the child toward the parents. 1

"For all parents…who have a child (with a disability), the diagnosis represents a loss which must be grieved. The loss for which the parent grieves is of the dream that all parents have of how their child and how their life would turn out. Their dream does not include a child with disabilities… (T)he grief engendered by the death of a family member is acute and terminal…The grief experienced by the parent of a child with special needs is chronic. There is usually minimal emotional support carrying a fetus for 9 months and delivering a healthy child. When the child has a disability, the mother feels she has failed in some way…" 3

"Grief very often translates into…behavior that is not helpful for the child. Guilt-ridden parents tend to over-protect their child ('I let something bad happen to you once. I am not going to let that happen again… I am going to make it up to you.')" 3

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY The American Academy of Developmental Medicine and Dentistry (AADMD) was organized in 2002 to provide a forum for healthcare professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities (ND/ID). The mission of the organization is to improve the quality and assure the parity of healthcare for individuals with neurodevelopmental disorders and intellectual disabilities throughout the lifespan.

FRESH ARRANGEMENT: All too often, individuals with disabilities were "hidden" in institutions and in back rooms. Today, they are in public and private schools, many forms of employment, entertainment and just about all settings for everyday activities.

COMMENTARIES AND PERCEPTIONS

Negative effects of over-protection and lowered expectations have far- reaching consequence. All that lack of belief can have an effect on one self. Individuals with disabilities are not expected to do more, so they do not. In some reviews, the responses by over-protected college students included: "I was restricted at home; was prohibited to go on trips; rarely allowed to leave home; I could never go where I wanted; they balked against my independence." 4

A consequence of lowered expectations can lead the individual to believe that the disability is the root cause of all his/her futility and uselessness. The over-protected child with a disability is often not challenged to strive for excellence; they are allowed to settle for less. 5

Children with disabilities may have developmental delays or physical limitations which could have an impact on the individual and how they are perceived by others. These differences may cause the child to develop perceptions about him/herself which may be based on actual functional limitations. "Parents must be aware of the child's perceptions concerning (her/) himself so that child's perceptions of the disability does not negatively affect the child's ability to reach their full potential." 5

One of the tasks of effective parenting is to teach their child appropriate behavior. Society and culture have different expectations about persons with disabilities, which may influence the parent's role as a parent of child with disabilities.6 This task can become even more essential and complicated. In the past, all too often, individuals with disabilities were "hidden" in institutions and in backrooms of homes. In today's world, youngsters with disabilities are in public and private schools (not segregated in classrooms for individuals with special needs); as adults, they are involved in all forms of employment, entertainment and just about all settings for everyday activities.

PSYCHOLOGICAL ISSUES FACED BY ADOLESCENT AND YOUNG ADULTS WITH DISABILITIES

• Adolescence is a period of complex biological, social and emotional changes with four major developmental tasks for the teenager to achieve:
• • To consolidate his or her identity.
• • To achieve independence from parents.
• • To establish new love objects outside of the family.
• • To find a vocation. When the adolescent has a disability, there are particular reasons why this period is almost always prolonged.
• • The individual with a disability has been over-protected and sheltered.
• • The growth of individuals with a disability occurs within the nucleus of the extended family. As a result, there is limited experience with peers.
• • The individual with a disability may have an identity crisis that is even more profound because of a dearth of appropriate role models. 7

FIRST, AVOID OVER-PROTECTION

• • Understand the difference between risk and risky: Most parents with over-protective tendencies have the best intentions to keep their child safe. By example: Every time your child rides a bike, he/she risks falling and getting hurt. But riding at night with no reflectors or a helmet is risky.
• • Practice safety: If you're worried your child will make decisions that stand in the way of their safety, try practicing safety skills before letting them try things on their own.
• • Take a deep breath: Usually, it's the parents who are more nervous than their kids. Try a simple exercise to calm your nerves by taking a deep breath.
• • Provide the children with life skills: Letting children have independence teaches them competence.
• • Let them be fun-finders: Children should be made to find their own fun with their own imagination.
• • Stop obsessing: Constant anxiety isn't helping your child or yourself.
• • Be honest about fear: When children see parents struggle, it will help them to see that all people have fears to deal with life.
• • Introduce dangers: Learning to control these things (using proper safety measures) kids will learn in a more meaningful way.
• • Teach problem solving: Teaching children problem-solving skills encourages them to be independent.
• • Avoid peer pressure: Avoid spending time with other parents who are over-protective.
• • Surround yourself with like-minded people: Avoid other "helicopter" or "snow plow parents". Surround yourself with other parents who could promote autonomy and independence. 8 (Note: A snow plow parent is a person who constantly forces obstacles out of their child's path.)

ON THE OTHER HAND

Comments from a "helicopter parent": "By definition, a helicopter parent is 'a parent who takes an over-protective or excessive interest in the life of their child or children.' As a parent to two chil dren with special needs, I don't see being over-protective as a bad thing. Having an excessive interest in their life seems perfectly fine and helpful in many ways. (sic) Parents of children with special needs follow their own sets of rules. Instead of focusing on the helicopter parent as some one with unnecessary fears who gives their child instant gratification and solves every problem for their child, let's look at the characteristics of an actual helicopter pilot and see how these top qualities are an asset in parents of children with and without special needs." 9

QUESTION: HOW DOES ONE BALANCE?

• • Against over-protection
• • Determined and understanding parents
• • A child's perspective: "Over-protective parents can hinder my life! The best thing I can learn is how to gain my liberty." 10 •

HOVER-CRAFT : WHAT IT TAKES TO PARENT A SPECIAL NEEDS CHILD

• The top six qualities of a great helicopter pilot (and parent) include:
• 1.Has Strong Communication Skills: A special needs parent needs excellent communication skills with doctors, school system staff, insurance companies, therapists, and even complete strangers. Special needs parents also require strong communication skills for connecting with their child.
• 2. Is Able to Handle Pressure: A special needs parent must handle the pressure of difficult decisions, stay calm during a time of crisis, and be able to survive stressful situations. Pressure for a special needs parent can come from dealing with finances, lack of services, sleep deprivation, and the desire to provide what is best for your child. Pressure can also come from managing relationships with a spouse/partner, family, and co-workers.
• 3.Uses Good Judgment: Confident in their decisiveness, a special needs parent must have good decisionmaking skills to analyze a situation and proceed in the direction that is best for everyone involved. Special needs parents often have to make decisions about how much freedom to give their child, when to step in, and when to step aside. When a special needs child becomes an adult, decisionmaking and good judgment skills may be needed more than ever.
• 4.Exercises Patience: A special needs parent's patience is necessary when working with teachers, special services, and therapists. Patience is especially needed for test results and when dealing with doctors.
• 5.Believes in Teamwork: Teamwork is essential to achieve the best results for the child. When the school, special services support team, and family work together, everyone benefits. When therapists, doctors, and the family can all be on the same page, great things can happen.
• 6.Has a Good Temperament: A special needs parent must have an even temperament and be able to manage stress well. A special needs parent often works in high-stress situations on a daily basis. Having flexibility and adaptability when dealing with frustrating situations is an amazing characteristic of a special needs parent.
• So, while many may ridicule the helicopter parent, I say be proud and fly high! 9

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 Jeffrey Seiver, DDS is a Clinical Assistant Professor, Department of General Dentistry, Stony Brook University, NY. 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

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• 2. Smart J. Disability, Society and the Individual. Gaithersburg MA. Aspen Publication 2001.
• 3. Luterman D. Counseling families of children with hearing loss and special needs. Volta Review 2004;104(4):215-220.
• 4. Nakamura CY. The relationship between children's expressions of hostility and methods of discipline exercised by dominant overprotective parents. Child Development 1959; 30(1):109-118.
• 5. Yura T. Raising the child with special needs. Journal of Adlerian Theory, Research and Practice 1983; 39(4):369-379.
• 6. Woolfson L. Family well-being and disabled children. A psychosocial model of disability-related child behavior problems. British Journal of Health Psychology 2004;9:1-13.
• 7. Strax TE. Psychological issues faced by adolescent and young adults with disabilities. Pediatric Annals 1991;20(9):501-511.
• 8. Jones A. 11 ways to avoid being an over-protective parent. Available from: romper.com/p/11-ways-to-avoid-being- over-protective-parent-10306.Accessed February 27, 2019.
• 9. McCarthy H. To the helicopter parent: keep flying. Available from: themighty.com/2016/08/letter-to-helicopter-parents-of- kids-with-special-needs-keep-flying Accessed March 2, 2019.
• 10. Noelle. How to deal with over-protective parents and gain your freedom. Available from: wehavekids.com/family-rela- tionships/How-to-Get-Your-Freedom-From-Overprotective-Parents Accessed February 27, 2019.