PRIMERA: DEFINICIONES:

drome, a genetic disorder that has left her moderately develop- mentally disabled. Corinne is lucky to have few of the characteristic physical problems of her disorder; however, her speech and cognitive abilities are clearly delayed. Now 17 years old (Figure 4-1), Corinne is meeting many of the same deci- sions and difficulties that “normal” teenagers face.

FIGURE 4-1 Sisters Corinne and Caroline

Corinne goes to a public school and takes a mixture of classes. Some are integrated with regular students and others are only with other teenagers with disabilities. High school is a trial for everyone, and my sister is no exception. Seeing people’s reactions to Corinne’s differences is always interest- ing, and many times disappointing. She is subject to teasing, bullying, and, perhaps worst of all, pity. Many people do not regularly interact with people who are mentally retarded and do not understand that Corinne wants no special treatment; she simply wants to be like everyone else.

Just like everyone else, Corinne has to tackle the teenage years. As she gets older, she desires more independence, just as I did at her age. When Corinne’s disability presents her with situations in which she is forced to accept help, she becomes frustrated and angry. Her mood swings are like those of any other adolescent, easy to trigger and quick to pass. Her adolescence is complicated by the fact that logical explanations do not always satisfy her. Corinne has an incom- plete understanding of time and events, which can make it difficult to relate to her way of thinking.

When faced with such daunting challenges, it is easy for Corinne to forget her strengths. Our family tries to remind Corinne of her abilities every day and find that in frustrating situations, it is often helpful to distract her with what she can do, instead of focusing on what she cannot do. Corinne has an incredibly detailed memory and has the ability to locate missing keys or beat anyone in a matching card game. How- ever, her greatest strength is her unwavering ability to love. The kids at school wave to Corinne while passing in the hall- way and she responds with unrivaled enthusiasm. In fact, everywhere we go, people recognize her. That’s because Cor- inne is never afraid to say hello to new people, give them a hug, or call them her friend. Even when she is made fun of or excluded, she never judges. As Corinne’s older sister, I thought it would be my job to teach her. However, I have come to realize that Corinne has much more to teach me.

Occupational therapy practitioners work with a variety of adolescents. Some are similar to Corinne, who has a stable preexisting condition that limits her functioning. Others have progressive disorders; still others acquire significant physical and/or cognitive disabilities because of trauma or psychosocial disorders that develop during adolescence. Only by thoroughly understanding “typical” adolescent develop- ment can an occupational therapy practitioner work with these teens in achieving their optimal abilities and full partic- ipation in society.

By Caroline Glass (2008), an English major at Wake Forest University.

BOX 4-1 Facts about American Teenagers  There are 39.7 million teenagers in the United States: half

between 10 and 14 years of age, and half between 15 and 19 years of age.

 Adolescents between 10 and 24 years of age are more racially and ethnically diverse than the general population: 52.2% are White, 16.5% Hispanic, 13.6% Black non-Hispanic, 3.9% Asian/ Pacific Islander, and 0.9% American Indian/Alaskan Native.  Two thirds of teenagers live in suburban areas, with the

highest percentage in the South (35.6%) followed by the Midwest (23.5%), West (22.7%), and East (18.1%).

 Two thirds of teenagers between the ages of 12 and 17 years live with both parents (2002 data).

 Approximately 94.6% of teenagers 16 to 17 years of age are enrolled in school (2006 data). More females than are enrolled in school. The high school dropout rate is highest among Hispanics (22.5%), Blacks (10.8%), and Whites (6%) (2005 data). One third of high school students also work.

 Seventeen percent of children and adolescents under the age of 17 live below the Federal Poverty Line. Black and Hispanic adolescents are more likely to experience poverty.

 More than 5 million children and adolescents (8%) between the ages of 5 and 20 years have a disability.

Data from monographAmerican adolescents: Are they healthy? (3rd ed.); and the National Adolescent Health Information Center: Fact Sheet on Demographics: Adolescents (http://www. nahic-ucsf-edu; http://www.census.gov/PressRelease/www/2002/demoprofiles.html).

age-related tasks and experiences are crucial to the process of gaining physical and financial independence from parents and redefining their psychological and emotional relationships with their parent. As they develop, adolescents establish norms and lifestyles congruent with the values and culture of their peers and their families. They accept and explore the physical and sex- ual development of their bodies. They work to establish their gender, personal, moral, and occupational identity. When suc- cessfully navigated, adolescence culminates in an overall state of well-being and the transition to adulthood and adult roles. Failure to integrate and engage in the roles and tasks of adoles- cence can result in ongoing physical and psychosocial difficulties that will affect future occupational performance and roles.51

Effective occupational therapy interventions begin with an evaluation of physical, cognitive, and psychosocial factors asso- ciated with adolescents’ development and the quality of their occupational performance. This includes standardized crite- rion-referenced (based on performance expected of an adoles- cent) or norm-referenced (based on actual performance of other adolescents) assessments that evaluate client factors and performance. Only interventions based on thorough evaluation are likely to be age appropriate and promote performance skills. Therefore, a working knowledge of adolescent development and awareness of occupations that facilitate age-appropriate development are fundamental to effective occupational therapy with adolescents. This chapter provides an overview of adoles- cent development intended to guide occupational therapy eva- luations and interventions with the adolescent population.

PHYSICAL DEVELOPMENT AND

MATURATION

Adolescence is characterized by the biologic and physiologic changes of puberty, dramatic increases in height and weight, and changes in body proportion. The age for the onset of puberty is variable and a child may begin to notice these changes from ages 8 to 14 years. The stimulus for this physical growth and physiologic maturation of reproductive systems is a complex interaction of hormones. It involves the hypothala- mus and the pituitary gland that releases hormones that con- trol growth and stimulate the release of sex-related hormones from the thyroid, adrenal glands, and the ovaries and testes (collectively referred to as the gonads).92

The growth and sex-related hormones initiate a period of rapid physical growth, which varies in intensity, onset, and duration. In this growth phase, people gain approximately 50% of their adult weight and 20% of their adult height. This process, which generally lasts about four years, can start as early as 9 years of age and may continue in some adolescents to age 17. In the United States, the average peak of growth occurs around age 11 for girls and age 13 for boys.

Growth of the skeletal system is not even: head, hands, and feet reach their adult size earliest. Bones become longer and wider. Calcification, which replaces the cartilaginous bone com- position of childhood, makes bones denser and stronger. Mus- cles also become stronger and larger. This process of skeletal growth and muscle development culminates in increased overall strength and endurance for physical activities. Increases in strength are greatest about 12 months after adolescents’ height and weight have reached their peak, and is associated with an overall improvement in motor performance, including better

coordination and endurance. Increases in muscle mass and heart and lung function are typically greater in boys than in girls. This growth is the basis of the difference in strength and gross motor performance between males and females.20_{Motor performance}

peaks for males in late adolescence around 17 to 18 years of age.16 _{Girls typically show an increase in motor performance,}

including enhancements in speed, accuracy, and endurance, around the age of 14. However, the changes in motor perfor- mance in girls are highly variable and are influenced by a com- plex interaction of physical and social factors such as their musculoskeletal development, onset of menses, personal inter- ests, motivation, and participation in physical activities.16

An adolescent finds security and social confidence in fitting within the “norm” for physical development, and perceived physical competency in activities such as sports builds self- esteem, particularly for young males. Early maturing teens’ self-confidence benefits from enhanced physical performance and enhanced social status. However, expectations of coaches, parents, and peers to excel at sport from can add unwelcome pressure and anxiety. These adolescents are more concerned with being liked and are likely to adhere to rules and routines. Adolescents who achieve the “desired standard” for physical appearance and/or level of physical performance (e.g., high school sports teams with high visibility such as football, cheer- leading, or basketball) receive validation and approval from their peers and from adults. Hence, during adolescence, early-maturing boys are reportedly more popular, described as better adjusted, more successful in heterosexual relation- ships, and more likely to be leaders at school. Conversely, late maturing boys are reported to feel self-conscious about their lack of physical development.42

Physical Activities and Growth: Teenagers with Disabilities

Physical activity is important for the health of all teens, includ- ing those with physical, emotional, or cognitive disabilities. Participation in physical activities maintains functional mobil- ity, enhances well-being and overall health, and provides opportunities for social interaction with peers. However, com- pared with nondisabled teens, adolescents with disabilities are less likely to engage in regular physical activity.44For example, adolescents with cerebral palsy report walking less than they did as children.2

Scholars have frequently reported that physical functioning (e.g., mobility) deteriorates in adolescents with congenital physical disabilities because of secondary musculoskeletal impairments associated with adolescent growth.2,100 _These

secondary impairments include an inability of muscles to lengthen in proportion to bone growth, deterioration of joint mobility due to contractures, fatigue, overuse syndromes, obe- sity, and early joint degeneration. However, recent evidence does not support that such deterioration in performance is inevitable.85Studies have shown maintenance or improvement in teens with disabilities who engage in physical fitness and/or therapy programs.3,85Activity/exercise programs have resulted in adolescents’ improving and maintaining gross motor func- tion and walking speed. The achieved independence promotes self-efficacy.60For example, Darrah et al. reported that teens with cerebral palsy who participated in a community-based fit- ness program showed significant gains in strength and reported improved psychosocial skills at school.24

Occupational therapy practitioners take an active role in assisting teens to identify opportunities for physical activity within supportive environments (e.g., teams and physical fit- ness programs that accommodate and welcome adolescents with disabilities). They work with the teen’s education team to facilitate inclusion in junior high and high school sports and fitness programs as specified as goals in a teen’s individual education program (IEP). Physical activities can also include programs outside of school, such as summer camps and com- munity activities. All such activities strengthen occupational performance skills and promote physical and emotional health. Physical growth in adolescents with disabilities can lead to performance difficulties that require occupational therapy interventions. For example, changes in height and weight often require reassessment at the level of client factors (e.g., positioning, balance, strength, and coordination) that affect clients’ occupational performance and activities of daily living (ADL). Clients may need new or modified assistive devices mobility aids (e.g., a wheelchair); they may also need new adaptive strategies, strengthening, and endurance training to ensure full participation in their occupations. With new envi- ronmental and activity demands1_{such as transitioning between}

classrooms in high school, some teens elect to conserve their energy and use a wheelchair instead of crutches or replace a manual chair with a powered chair.

Teens with progressive disorders (e.g., spinal muscular atro- phy, Friedreich’s ataxia, and muscular dystrophy) may require ongoing therapy as their functional abilities deteriorate. For example, boys with Duchenne’s muscular dystrophy, the most common type of muscular dystrophy, use wheelchairs by early adolescence for functional mobility because of their progressive muscle weakness. Their ability to use their hands and fingers for eating, writing, and keyboarding abilities becomes weaker throughout their adolescence. Respiratory and trunk muscles become progressively weaker, and scoliosis and other skeletal deformities including joint contractures at the ankles, knees, elbows, and hips are common. With these adolescents, occupa- tional therapy practitioners have an active role in facilitating adaptation to the progressive loss of motor function. Often they implement compensatory strategies such as wheelchair seating to maintain skeletal stability, splinting to prevent deformities, and assistive technology (e.g., voice recognition software for computers) to maintain occupational performance.

Primary caregivers must also adjust to the physical growth and physiologic maturation of the adolescent. Adolescence can be challenging, especially for parents/caregivers of adoles- cents with moderate to severe physical disabilities and/or mental retardation, because of the continued and, at times, increased levels of care required. For example, transferring small children into and out of vehicles, lifting them into the shower, and dressing them are relatively easy. As the adolescent grows and gains weight, these caregiving tasks become more difficult. Significant household modifications may be needed to accommodate the changes, and additional adapted equip- ment, such as the use of commode chair or hoists for transfers, may be required for basic ADLs.

In other situations, such as when an adolescent is develop- mentally disabled, the family’s challenge is to encourage more autonomy and independence in self-care to prepare for a tran- sition to semi-independent settings such as a group home. This can require that parents reduce supervision and the

adolescent develop independence in new self-care routines, such as shaving or managing menses.

Although the occupational therapy practitioner effectively addresses practical needs with adolescents and parents, it is equally important that the practitioner be aware of the emo- tional adjustment for parents. With each new developmental stage that has a universally recognized marker of progress (e.g., going to junior high school, first date, learning to drive), parents may revisit their grief as they adapt to the realization that their child may not have the opportunity to enjoy many of these activities. Adolescence can heighten parents’ awareness of the barriers and limitations that exist for their children.49The effective, empathetic practitioner is sensitive to the meaning of adolescence for teens and their families and acknowledges the experience and concerns that this period brings.

PUBERTY

Puberty is the term used to define the maturation of the repro- ductive system. During puberty, primary and secondary sex characteristics develop in conjunction with significant physical growth. This involves both biologic and psychosocial develop- ment. A complex interaction/feedback loop involving the pituitary gland, hypothalamus, and the gonads (ovaries in females and testes in males) controls the biologic development. In healthy adolescents, full sexual development may vary as much as 3 years from the average age. The average age at onset of puberty for American girls is between 8 and 13 years, with occurrence of the first period (menarche) between 12 and 13 years of age.8,81In boys, puberty generally begins later than it does for girls, on average between 11 and 12 years of age.

Changes in the sex organs involved in reproduction (e.g., menarche in girls and the growth of penis and testicles in males) are the hallmark of puberty. In girls, race, socioeco- nomic status, heredity, and nutrition influence the time of menarche. Ovulation usually occurs 12 to 18 months after the onset of menarche.92Breasts, areolar size, and adult pubic hair patterns develop over a 3- to 4-year period. This is also a period of peak growth in height, and a girl usually reaches her full height two years after she begins menstruating.

Puberty has additional challenges for adolescents already dealing with developmental and physical disabilities. Minimal information about puberty in this population is available to guide these adolescents, their caregivers, or health profes- sionals.90_{Some research suggests that in girls with moderate}

to severe cerebral palsy, sexual maturation begins earlier or ends much later than it does on average in the general popula- tion.114 A retrospective study involving women with autism spectrum conditions reported menarche either 8 months ear- lier or somewhat later than is typical (i.e., around the age of 13 years).62

In boys, development of the primary sex characteristics, such as an increase in the size of the testicles and the penis (length and circumference), coincides with overall physical growth. Changes include growth of the larynx, causing a deep- ening of the voice, and the ability to obtain an erection and ejaculate. First ejaculations (spermarche) occur on average between the ages of 12 and 13 years, but the seminal fluid does not contain mature sperm until later (around age 15). In this process, referred to as adrenarche, the adrenal glands are largely responsible for the secondary sex characteristic such

as the growth of axillary and pubic hair, axillary perspiration, and body odor. Also, many adolescents, especially males (70% to 90%) develop acne because of the effect of testosterone.39,81 For adolescents with disabilities, puberty can present addi- tional practical and psychosocial issues. For example, misper- ceptions exist about the capacity of an adolescent with a disability to be in a sexual relationship, experience sexual desire, and reproduce successfully.41 Many adolescents with disabilities report that others ignore or avoid their emerging sexuality. Consequently, they receive minimal education about contraception or sexually transmitted diseases or how their dis- ability may affect their sexuality or reproductive.41,58Sexual development and the individuation process can be difficult for parents, especially when the child requires extensive care- giving.58 _{Adults with disabilities describe the ambivalence}

and difficulties that their parents had in acknowledging them as sexual beings.46,104Mary Stainton poignantly describes the demands associated with managing her menses, the emotional strain this task posed for her mother, and the decisions that denied her womanhood. In the following excerpt, she describes her mother’s response to her menses: “Frustration ripped through her as she cleaned between my legs and pulled up the Kotex pad. She felt she constantly needed to be with me when I went to the bathroom. I felt guilty for making a mess: for bleeding at all” (p. 1445).104Her menarche was not cele- brated as a coming of age as a woman; instead, she writes, “Around the time I was 12 or 13, we started talking about options. She [her mother] took me to doctors. I was put on the pill, then, given shots to stop or at least curtail my men- strual flow. A normal body process was now a huge problem, we had to control” (p. 1445).104

A meta-analysis of 36,284 adolescents in the 7th through 12th grades with visible (e.g., physical) and nonvisible (e.g., deafness) disabilities found no differences between adolescents with or without disabilities, with respect to the proportion