Development and Education

Living with Lowe Syndrome

VI. Development and Education
Boys with Lowe syndrome are not all alike. The presence and severity of symptoms varies from child to child, even in the same family. As a result, the age of achieving major developmental milestones varies. However, some general statements can be made about the development and educational needs of boys with Lowe syndrome based on the observations of families in the Lowe Syndrome Association (LSA) as well as on recent research findings.

Because of their physical and mental handicaps, boys with Lowe syndrome are usually significantly delayed in most areas of development. While development generally follows the normal sequence, the level of development in one area (language, for instance) may be more advanced than in another (gross motor skills, for instance). Various therapies and educational programs can help affected boys develop to their maximum potential.

In general, children with Lowe syndrome, even those with behavior problems, are known to have "bubbling" personalities. They are loving and sociable and have a wonderful sense of humor. Many have a special feel for music. When healthy and in a stimulating environment, they are often happy and alert. With help, they can grow and develop into functioning members of their families and communities and can be enjoyed and appreciated for their unique personalities and accomplishments.

A. Infancy and the early years

1. Early intervention. Research has proven that early intervention with handicapped children and their families is both crucial and effective. If support and services are provided as early as the need is apparent, a child's development will progress more quickly than if left unattended until age six or older.

In recognition of the effectiveness and critical importance of early intervention, the United States Congress passed a law in 1986 which extends the rights previously given to school age children with handicaps to handicapped children from ages three through five. This law also assists states in developing early intervention programs for children from birth through age two who need special services.

Parents play an important part in their child's development and education. They should learn all they can about programs that can help their child develop. Parents may contact their local school system or state department of education for information on programs and rules in their state.

2. Physical development. Infants with Lowe syndrome benefit greatly from physical therapy. Some families contract for physical therapy service on a private basis. Others benefit from infant intervention programs provided by local communities. Professional therapists can often train parents to carry out a therapy program in the home. In the early years goals may include holding the head up in a prone position, rolling over, sitting alone, and scooting or crawling. As in most areas, progress is usually slow. However, most affected boys will achieve these goals between a few months and five years of age.

3. Speech development. Delayed speech development is particularly frustrating for many parents during these years. Several factors contribute to delayed speech, including physical characteristics such as low muscle tone, vision impairment, high palate, and frequent illnesses; delays in intellectual development that affect the understanding of word meanings, the ability to process and organize information, and the ability to use the information to communicate meaningfully; and environmental factors such as limited play and learning opportunities, minimal social activities, and limited ability to move independently around the environment.

Despite significant speech delays, most boys with Lowe syndrome will eventually be able to talk. By the age of 2½, most affected children can imitate words. By age seven, almost all can talk to some extent, and most can (at the very least) combine two words into a phrase. Many, in fact, eventually develop into very talkative individuals.

4. Eating problems. In some cases, the same factors that cause delayed speech may also contribute to eating problems. Poor muscle tone may result in reduced control of fine motor movement of the tongue, lips, and jaws that are necessary for sucking, swallowing, and chewing. As a result, some boys have difficulty making the adjustments from baby food to table food. An oral-motor treatment plan may be developed as part of the child's therapy program. By the age of five, the majority of children with Lowe syndrome are able to eat table food (see "Eating Difficulties" in Special Health Concerns).

B. Middle childhood and adolescence
In 1975, the United States Congress passed the Education for all Handicapped Children's Act (Public Law 94-142). This law requires all states to provide a "free, appropriate public education" to school-age children with handicaps.

Public school programming for boys with Lowe syndrome depends upon several factors, including the boy's individual needs and community resources. Some boys are enrolled in classes for the mentally handicapped. Some participate in regular classrooms with support. For other boys, programming is geared toward self-help and pre-vocational skills. Just as the presence and severity of symptoms varies from child to child with Lowe syndrome, the educational plan also varies.

1. Walking. Generally, physical therapy continues during these years, with an emphasis on walking and other gross motor skills. During the period from five to thirteen years of age, about 70% of boys with Lowe syndrome learn to walk alone, with most having developed the skill by the age of seven.

2. Toileting and self-help skills. Toilet training can be quite challenging for boys with Lowe syndrome. Although many begin training in the earlier years (and a few succeed), the majority achieve this major milestone between the ages of five and thirteen, or even older in some cases. Other self-help skills such as dressing and grooming may also be delayed. Most of the boys have great difficulty with fine motor skills such as tying shoelaces, buttoning buttons, and writing. Special adaptations such Velcro fasteners and computers can help the children gain more independence.

3. Puberty. In general, puberty is slightly delayed in boys with Lowe syndrome, but otherwise follows a typical progression.

4. Behavior. As mentioned previously (see "Behavior Problems" in Brain and Central Nervous System), some boys develop severe behavior problems, especially during the school age years. As a result, parents and school staff may have to spend significant amounts of time and attention dealing with these problems because they can interfere with learning, social interaction, and family functioning. A behavioral psychologist may work with parents and teachers to develop appropriate and effective methods for dealing with the problems and helping the child to maximize his capacity for learning. Behavior problems in Lowe syndrome are believed to have an organic origin. That is, they are caused by a problem in brain function due to the syndrome. As a result, parents and teachers may find it helpful to consider the behavior problems as another one of the child's handicaps. Also, because medications are often helpful in treating the behavior problems, a physician may be involved in the treatment and educational plan.

C. Adulthood
In 1973 Congress passed the Vocational Rehabilitation Act, Public Law 93-112. Section 504 of the Rehabilitation Act prohibits discrimination against people with handicaps and protects their rights relating to voting, education, accessibility, and employment. The fundamental purpose of this law is the development and implementation of a comprehensive and coordinated program of vocational rehabilitation and independent living.

Throughout life, most boys with Lowe syndrome live at home with their families. A few families, however, have decided that placement in a residential setting is appropriate due to the complexities of medical management, educational needs, or severe behavior problems. As adults, some individuals have successfully made the move into a group home while a few live independently. Some work in sheltered workshops or participate in other special programs for adults with disabilities. Parents should consider establishing legal guardianship of their son when he turns 18 years old.