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Winter 2001 Table of Contents
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Stepping Over Thresholds: Transitions for Children and Youth with Visual Impairment

By Dr. Natalie C. Barraga, Professor Emerita, The University of Texas at Austin

From birth throughout life babies, children, and youth with visual impairment have numerous challenges and transitional stages as they develop and learn. We might consider these as thresholds they must "step over" if they are to utilize their functional vision to the maximum. Team members involved at various stages, the variables to be considered, and decisions to be made, change as the challenges increase. In the early years, parents, with other team members, are responsible for providing the opportunities for visual development and visual learning. As progress is made and the child becomes more responsible, the focus changes. The child's involvement in educational and personal decisions gradually increases over time.

Let's take a look at six typical transitional stages, the team members who are involved at each stage, and the variables to be considered as crucial decisions are made.

Stage 1 - Infants and Parents from (Birth to 2 years of age)

Initially, parents are dealing with emotional issues such as shock, trauma, and grief associated with the first diagnosis of visual impairment. There is much confusion and uncertainty in their thinking. Gradually they begin to understand and to accept the reality of the situation. Their next threshold is to begin seeking information through support systems, reading, and training. In Texas, parents will connect with the Early Childhood Intervention (ECI) program to help them navigate through their child's earliest years.

Medical and clinical personnel (preferably pediatricians, pediatric ophthalmologists and low vision specialists) are responsible for diagnostic information. This includes describing the structure and condition of the internal parts of the eye and any possible medical/surgical interventions. They will also prescribe glasses, contacts, or other optical devices. It is desirable for there to be frequent monitoring of the health of the eye and retina, as well as, noting any changes in visual behavioral responses. This is especially critical since there is no way to measure just how much useful vision may develop.

Teachers of the visually impaired (TVI) are the next individuals to join the team. They are brought in by the ECI program to help establish eligibility for specialized vision services and become part of the Individual Family Service Plan. Their challenge is to evaluate functional vision use, establish communication and rapport with the parents, provide positive support to the IFSP team, and interpret clinical information. The TVI will also try to answer questions from the team or refer them to appropriate people or reading material. During home visits they will model teaching techniques for the parents. The TVI should also provide written information to help the parents learn how to work with their child. This includes learning to emphasize tactual, visual, and auditory stimulation; name objects; imitate sounds and actions, and encourage and structure body movements. (Remember that babies will have only limited, if any, imitative abilities at this age.) There are many resources on the unique techniques needed by babies with low vision which the TVI can offer families during this stage . Some are available on tape, others in print, and still others on the Web. There is also much for the parents to learn just by meeting other families.

Certified orientation and mobility specialists (COMS) begin to teach orientation to touch, sound, and visual objects when children are about 6 months old . They may offer checklists of activities to help guide parent/child interactions. These professionals model ways to teach reaching, sitting alone, and crawling. Later on, they will focus on strategies to encourage walking. Other instruction provided by the COMS includes teaching body parts, body positioning, spatial concepts, and body movements. They may encourage parents to keep a journal documenting each new voluntary movement and behavior that indicates how the child uses his/her vision.

Blind and Visually Impaired Children's Program (BVICP) caseworkers from the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) (TCB) are also brought in at an early stage and stay involved throughout a student's educational life. Their role is to help parents access resources and learn about their role in the educational, health and human services systems.

Others may also be added to the team, coordinated through ECI. These include: a social worker, to make parents aware of, and help them obtain, resources; a neurologist, in the event of noticeable movement deviations; physical, occupational, and/or speech specialists who may need to address additional disabilities; and/or a low vision specialist to teach parents about encouraging their child's use of vision.

Stage 2 - Toddlers and Preschoolers (2-4 Years of age)

This is the stage when the child is striving for independence in all areas. Parents (or primary caregivers) are still the critical members of the team. Their primary decision is to determine who gives the major care during the day: parents, another family member, or day care. This is the stage when the child requires one-on-one teaching of skills. A large focus is placed on language learning. Decisions need to be made about whether there is exclusive home teaching or a blend of home teaching and center-based teaching. The parents must find out what options are available in their community such as a regular daycare, a preschool, a public school-based classroom for children with disabilities or ( in larger districts) a special class for children with impaired vision. Family needs outside of the educational arena continue to be supported primarily by ECI (until age 3) and the BVICP caseworker from TCB.

Medical /clinicians are still key members of the team at this stage. Typically they will be encouraging regular visits to monitor stability of the eye condition and assess visual responses. It is important for them to invite reports from parents and teachers about the child's visual behavior. These professionals will continue to evaluate lenses and/or optical devices for their appropriateness.

The TVI will help determine the amount of vision-specific services needed to fully support the young child's learning. However, at this point, preschool teachers often begin to be the leaders for daily learning development and diagnostic assessment, working with parents, the TVI, and clinicians. The challenges for the team are to select and utilize appropriate magnification (when needed); work on major cognitive skills such as language development and story telling; provide stimulation of all senses; develop gross and fine motor activities; establish cognitive concepts; and encourage increasing independence and responsibility.

The COMS focuses on sensory orientation skills associated with movement. He/she will also work to increase the scope of gross motor skills and some fine motor skills, such as protective techniques, trailing, sighted guide, etc. The COMS may also introduce mobility devices for independent movement such as a variety of push objects and later the cane.

Playmates become important team members at this time. At first they engage in parallel play, then model imitative play and other movement actions. They become teachers when there is partnership in activities such as running, hopping, skipping, and jumping. Language interaction stimulates curiosity. It becomes a motivating force for exploration and engagement in the world beyond the child's visual and tactile reach.

Stage 3 - Kindergarten, 1st and 2nd Grade (5-7 years of age)

This stage occurs from about 5-7 years of age and involves many of the same team members as the previous stage with a few additions. Parents, in consultation with teachers, have important placement decisions to make . Should the child attend regular or special kindergarten? Is the child is ready to begin regular schoolwork? And later on, does the most appropriate placement mean a regular class with a TVI available as needed, a resource room with a TVI as needed, a self-contained class with TVI support, or a special school for the blind? The child's visual status is not the sole determinant in making these decisions. One placement may be appropriate at first, and another later on. The placements may be short-term (such as in a residential school) or long-term, depending on the progress and needs of the individual.

At home the parents are challenged to encourage more independence and greater responsibilities in personal and home activities. Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) staff may provide resources to support family growth. Play opportunities with peers are especially critical. Children need time with parents to communicate about activities and incidents of the day, to ask questions, and receive open and candid answers. By this stage children should know exactly what their visual condition is; how to explain it to peers and teachers; how to advocate for their visual needs; and how to ask for assistance when necessary. Children who are using any special equipment or devices need to be able to explain what they are for and how they make work more efficient. They may even need to be able to oversee their peers experimenting with magnifiers or telescopic devices. Children also need to be able to politely refuse offers of help when it's not needed, and to accept help graciously when it is necessary.

The educational diagnostician becomes a member of the team and collaborates with the TVI to assess visual, auditory, and tactile concepts; evaluate gross and fine motor coordination; assess receptive and expressive language skills; and note any sensory preferences by evaluating their efficiency. In some cases he/she may be asked to administer educational test measures and, if indicated, to give group or individual intelligence tests. Typically standardized tests must be modified for children with impaired vision. Both the TVI and educational diagnostician share responsibility for interpreting results and sharing them in a sensitive manner with parents and teachers. It is this information that will serve as the foundation for development of the individual educational plan (IEP).

Team members encounter many thresholds in these early years. Parents and the TVI especially should be in constant communication with each other regarding placement decisions and the educational plan's content. Special vision skills training may be incorporated as a part of the school day or scheduled after school or on weekends. Special skills in the classroom include teaching handwriting (preferably cursive) and introduction of all primary learning media - visual, tactual, and auditory. Training in all learning media continue, without exclusion of any one, until the student shows a clear preference for, and efficient use of, one or two media. Another skill focused on at this time is the proper use of magnification devices, monoculars, and other non-prescriptive and prescriptive devices. Classroom independence and responsibility are also emphasized during this stage.

The COMS is also challenged by many thresholds during this stage. These include teaching skills such as: traveling independently in the school building or local neighborhood; learning how to locate one's self in space using landmarks and directionality; learning how to use the monocular for distance orientation and location; understanding safety factors; and developing or perfecting cane travel if needed.

The low vision therapist or specialist is responsible for evaluating and improving the use of optical devices (magnifiers and monoculars). He/she may show parents how to encourage the child's use of vision in personal care and home activities. Use of residual vision is not just for the classroom, but should also be encouraged in everyday living at home and in the community .

Medical/clinical team members continue to receive reports from parents, teachers, low vision specialists/therapists, the TVI and COMS. They continue to monitor the condition of the child's visual system, and suggest any safety cautions or activity limitations. They will also continue to check on the appropriateness of prescriptions for lenses and optical devices.

Stage 4 - Elementary School (8-12 Years of Age)

This is a crucial time for students and for all members of the team. It is a time when many issues and decisions require communication and cooperation between the team members who all have unique and corporate responsibilities. Parents, the child with visual impairments, TVIs, COMs, classroom teachers, Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) staff, peers, and others share this responsibility. The key challenge is placing the learning scope and efficiency of the students as a priority. This helps ensure the child's progress to greater levels of decision making and independence in learning and in preparation of school work. Placement changes may be indicated. The child may return from special school or move to a new placement in a special school for short or long periods. If the team chooses placement in a local school, will regular class placement be part time or full time? Is a resource room with a specially trained teacher available, or is the vision teacher available on an itinerant basis? Does the child need a self-contained setting? The parents and local district must collaborate on the decision.

The next major threshold relates to continuing assessment of the appropriate learning media. Will it be visual or will it be tactual supplemented by auditory learning? Will both tactual and visual skills continue to be developed, according to the child's efficiency and endurance? Perhaps tactual skills should be emphasized, supplemented by selected visual and auditory materials. As soon as the primary learning medium/media have been selected, formal listening skills are introduced. This is especially important in the later years, so appropriate additional reading material can be made available for listening. Once braille and/or print skills are well established, listening in recreational reading activities is introduced.

If the student uses visual materials, another factor to consider is how the student will access them. Does he/she need regular print with appropriate magnification (stand or hand held magnifiers, CCTVs, etc.) or large print? The clinical low vision specialists may evaluate the child for appropriate use of low vision aids or glasses. The TVI performs a functional visual evaluation to determine how these devices will be used in the classroom and for what purposes. For example, a student with severe low vision may wish to use the CCTV for practicing handwriting or looking up a word in the dictionary, but not as their primary reading device. If that is the only device which enlarges print sufficiently for the student to see, then that student should use braille as his/her primary reading medium. New skills to teach include typing and keyboarding for the computer, along with training in the use of the abacus and calculator. Listening skills are added as other learning become more efficient.

Another critical threshold is the acquisition of social skills that enhance communication and interaction with classmates, teachers, and other adults. The child must continue to increase his/her ability to express thoughts, needs, wishes, and concerns that lead to more independence and greater responsibilities at school, at home, and in the community. These skills are needed for successful leisure and recreational opportunities. Each year new social skills are practiced until they become second-nature to the student who is preparing for middle and high school programs.

Stage 5 - Middle and Senior High School (12-18 Years of Age)

Some of the same team members are still present in the early and later teen years , and others are usually added as educational curriculum takes on a broader scope of academic, vocational, and job-seeking considerations. Peers and other family members, classroom teachers, TVIs and COMs will be joined by a transition counselor from the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) , other human service providers, and/or job coach. This is the stage in which there is refinement of personal and academic skills. The student learns to acquire, evaluate, and use information and organize data. He/she learns to select, use, and maintain equipment and tools, including technology. Personal and vocational goals start to be set. It becomes more important for the young adult to analyze and solve problems more independently at school, home, and in the community. Personal and behavioral values, such as honesty about his/her visual condition related to peer pressure, are also developed. Job-seeking skills are emphasized and he/she begins to perform volunteer and/or paid work.

As these skills are learned, more family members may be included on the team. For example, siblings and other relatives may begin to assume roles in planning. Consultation with career or job counselors may be beneficial, in order to learn about future career possibilities. Students will want to acquire adult mentors with visual impairments as realistic support persons. There is a need to become aware of what work is and what kinds of jobs are available. We want the student to demonstrate good work habits such as following instructions, assuming responsibility for oneself and possessions, meeting time schedules, and staying on task. Other competencies for the student to explore include time management, adjusting to greater academic and personal responsibilities, mastering a broader range of adaptive skills, conducting interviews, and entertaining and implementing more complex ideas.

Peers may have a strong influence in these years. Students continue to learn about values, standards of behavior, and how to interact and communicate with others. As the young adult seeks to express his/her growing independence, respect for parents and other adults often presents some challenges. The student (and his/her parents) will appreciate learning skills that compensate for the inability to drive. Extracurricular activities such as clubs and sports may give a boost to self-esteem and an identity unique to the individual.

Stage 6 - Transition to Adulthood (18 Years and Beyond)

Because skills build over time, many team members become less involved, although they stay connected. The young adult, rehabilitation counselors, COMs, adult models, evaluators, peers, and family become the primary team members. Team members begin to focus on what happens next, outside the public school arena.

If the individual has additional physical, mental, and/or emotional disabilities, identifying the proper work and living situation becomes a priority. Should the individual live in a group home, in his/her parents home or in an apartment? What types of support programs, such as Medicaid waivers and Master Pool Trusts will need to be accessed? Will a job coach be needed, or will the individual be involved in a day activity center program?

If the young adult does not have additional disabilities (i.e., his/her primary challenge is a visual impairment), then the threshold decisions may be less complicated. The questions he/she will be asking, with support from the team, are more like those asked by his/her typical peers. Is further education appropriate, needed and desired? If so, will it be trade school with future placement in an apprenticeship or vocational trade? What skills are needed and can they be acquired? If junior college is selected, will the focus be on an academic curriculum leading to additional schooling at a university? Will the focus be training in a specific skill, or a variety of related skills, such as those needed to be a teacher's aide, child-care worker or small business owner?

When a professional career is deemed to be appropriate, then a university setting is the choice. Previous career planning should have determined the career best suited to the individual. Of course, this decision should be the result of a careful evaluation of interests, abilities, skills, work habits, independence, and responsibilities.

Whatever career choice is made, job skills such as job seeking and interviewing, management of work responsibilities, networking and communication need to be refined. Increased sophistication in human relations and greater maturity of thoughts and actions in decision making are also needed. Self-evaluation of personal and work skills, realistic life planning, self-advocacy and self-confidence also take on increased importance.

Living arrangements should be selected on the basis of personal and daily living skills, self-direction, travel skills and transportation needs, and economic considerations. Decisions must also be made regarding independent travel. If he/she wants a guide dog, an orientation and mobility evaluation will be necessary. The COMS will need to see where he/she lives, and evaluate safety factors, level of responsibility and personal preference. An individual who wants a guide dog must also be a skilled cane user for those times when using a dog is not appropriate.

Someone who has learned all the skills necessary to step over these thresholds, should grow up to be a visually impaired adult who can approach and respond to all people with ease and comfort. They will be a person who is confident, comfortable with his/herself. Someone who has a curiosity to enter new activities and a willingness to accept limits and routines. They will respect the feelings and rights of others, set personal goals, make life plans, and reach desired standards. This individual will be someone who accepts the consequences of mistakes without asking for favors or making excuses; an active participant in the future.

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