Teaching Life Differently: The Expanded Core Curriculum for Babies and Young Children with Visual Impairment

Rogers

Introduction

What is the Expanded Core Curriculum?

Core curriculum in the educational arena is the knowledge and skills a student should learn before graduating from high school. It is the basis for almost all learning from preschool through high school. Students with visual impairment get access to the core curriculum through training and adaptations, chiefly in technology, braille/low vision formats, and orientation and mobility. These services are provided by certified Teachers of the Visually Impaired and others with specific training in early childhood development, deafblindness, and other medical and learning challenges.

Children who are sighted learn concepts and gain experience through approach. Individuals with vision impairment may also require specific interventions to learn independent living skills, parental responsibilities, self-advocacy, and community relationships.

The history behind the Expanded Core Curriculum

The inception of the Expanded Core Curriculum (ECC) began in 1993 with the development of the National Agenda for the Education of Children and Youth with Visual Impairments Including those with Multiple Disabilities. This grassroots project was a collaboration of parents, teachers, and administrators. Using the National Agenda’s guidelines, educators created a special additional curriculum for blind and visually impaired students.

The Expanded Core Curriculum has nine core areas which address the goal of becoming competent, contributing members of the community, with supports as necessary.

These are:

Sensory efficiency

Independent living

Orientation and mobility

Social skills

Recreation and leisure

Self-determination

Assistive technology

Compensatory skills

Career education

The ECC and preschool children

Thanks to the National Agenda, and the tireless work of educators, parents, and advocates, the ECC is now part of the standard curriculum for children with visual impairment in grades kindergarten through high school.

At Anchor Center for Blind Children in Denver, Colorado, we believe in implementing an age- and developmentally appropriate version of the ECC with very young children (age birth to 5). For babies and young children with vision impairment, building the foundation of skills that sighted children usually learn incidentally, or through imitation, requires careful attention. We must set up the environment, implement specific teaching or parenting strategies, and focus on each child’s unique abilities or challenges.

Building a strong foundation for early learners means paying close attention to the senses of hearing, smell, and touch. Parents and teachers who work with children who have vision impairment see them do this every day. For example, a child may use tapping or clicking for echolocation, smells to identify people and things in the environment, or ear pointing (turning the ear towards the person speaking) rather than making eye contact. We sighted folk need to respect the capabilities outside of vision that we rarely use. Our children can be the best teachers!So what does career education look like for a one-year-old? Money management for a four-year-old? Self-determination for a two-year-old? The staff and families of Anchor Center for Blind Children have taken on the challenge of defining what the Expanded Core Curriculum can look like for a child, birth to five, with a visual impairment, with or without additional disabilities, especially deafblindness. It’s a challenge, but it’s exciting to live out and to share our intent: to SEE LIFE DIFFERENTLY!

The goal of this book and how we hope it will be used

The information in this book is a compilation of years of experiences gleaned directly from the authors and the staff and parents at Anchor Center for Blind Children. These are tried and true techniques, concepts and activities that address the unique needs of very young children with vision impairment. We hope this book is a useful resource for parents, educators, and therapists. It will help them understand the ECC and how they can incorporate teaching strategies into their interactions with children in all settings each and every day.

A deeper understanding

It is during the early years of development that parents must gain a deep understanding of the functional implications of their child’s diagnosis. The diagnosis evaluates vision, hearing, and other medical conditions like cerebral palsy, metabolic disorders, seizures, and other neurological or endocrine issues. Finding local or national support groups and reliable informational websites can be invaluable.

Parent and teacher input is a vital component to these organizations. They offer updated and understandable ophthalmological and medical information, and resources for dealing with implications of specific diagnoses. Parents can learn what to expect, what needs to be prepared for, and find support from other parents. (See Appendix and resources at the end of each chapter.)

With thoughtful teaching and opportunities for experiential learning, children with vision impairment can learn to use all their senses to understand their world.

The Expanded Core Curriculum in Early Development

Core Curriculum: Math, science, social studies, language arts

Expanded Core Curriculum (ECC): Everything else you need to learn to be successful in life!

The ECC was created in 1993. This curriculum was developed to ensure the unique needs of students with vision impairment were being met in schools and in the community. The ECC focuses on all the things needed to help children with vision impairment, including those with multiple challenges, be as successful as possible in all areas of life.

How does the ECC relate to babies and young children?

So much is learned in the early years of development! For babies and young children with vision impairment, the ECC helps build the foundation of skills that sighted children learn incidentally, or through imitation. This requires careful attention to adapting/modifying things in the school, home, and play environments, using specific teaching and parenting strategies, and focusing on how to best meet the unique needs of each child. Our goal at Anchor Center for Blind Children is to help parents and their children develop a strong foundation for a lifetime of learning.

ECC Domains

Sensory efficiency: From the time they are born, babies and young children must learn to take in, process, and understand information from all their senses (hearing, taste, touch, smell, vision, sense of position in space, and sense of movement in space). Children use their senses to explore, understand, and interact with things and people in their world. Vision impairment has a huge impact on sensory processing, as vision is one of our most important senses for taking in information. Effectively using all of the senses that are not impaired is something that starts at birth and needs to be well developed for higher level learning in all areas of life. Having additional sensory impairment like hearing or physical challenges makes sensory efficiency even more challenging (but not impossible). In most cases the other senses do not automatically work better because of vision loss—it must be thoughtfully taught/introduced and adapted.

Compensatory: This area focuses on compensating for vision impairment through use of things like magnification, auditory/hearing skills, and tactile/touch skills for learning. This is very closely related to sensory efficiency. Light boxes, braille books, exploring use of a brailler, and using the CCTV are examples of compensatory skills that can be introduced at an early age. Children with vision impairment need to play with these compensatory tools early, just as sighted children scribble with crayons or look at picture books long before they learn to read or write. Concept development is a big part of compensatory skills, for example—big/little, rough/smooth, heavy/light, etc.

Life skills/independent living: This is a very important domain for children birth to five! It includes foundational self-help skills all babies and children learn in the early years of life. Some children will always need help with daily care, but there are many things they can do to participate and help. Starting at birth, children must first learn to eat and regulate their sleep. As they get older, children can learn to help more with bathing, dressing, toileting, keeping track of their belongings, and doing simple chores. For children with typical vision, a great deal of these skills are learned through watching and imitation. Children with vision impairment require more adaptations and intentional teaching to learn these skills.

Social skills: This also begins at birth, as babies bond with parents/caregivers. Any medical issue, including vision impairment, can make bonding and development of typical social skills more challenging. Helping babies and children learn the skills needed to be happy, function as part of a group, and develop friendships is an essential part of parenting and teaching in the first five years of life. This area of life can be impacted significantly by sensory processing issues and other medical challenges common with many vision diagnoses.

Learning through hands-on experiences is a key component of the ECC.

Self-determination: Learning to be confident, independent, and a good self advocate is an essential part of being well adjusted and successful. Again, this begins early in life with the first steps of playing independently and separating from caregivers. Later, it is important a child feels comfortable speaking up and saying: I can’t see that, The lights are too bright, I want to try, I need help, or I can do it!

Orientation and mobility:Orientation refers to the ability to know where you are and where you want to go. Mobility refers to the ability to move safely, efficiently, and effectively from one place to another.

For babies and young children with vision impairment, this starts with understanding their own body movements and where they are in relationship to other things and people in their world. A baby putting his hands in his mouth and playing with his feet are examples of very early orientation and mobility skills. As a child learns to move out more in space (rolling, scooting, and walking) his or her orientation and mobility skills grow. Even a child who cannot walk or crawl can learn orientation and mobility skills. Everybody can understand where they are and where they are going and should be an active part of that process.

Recreation and leisure: Everyone needs to have things he or she does for fun, both independently and as part of a group. From a very early age children need to be exposed to a variety of recreation and leisure activities such as music, movement games, board games, manipulative toys, gardening, and play in nature. Again, this is something that may require adaptations for vision impairment and more hands-on exposure to a variety of activities.

Assistive technology: This may be as simple as playing on a phone or tablet to using a very complex communication device. Exploring which assistive technology may be helpful in the realm of teaching and recreation and leisure can begin early. But it is important to introduce the right technology at the right time. As noted above, assistive technology and compensatory skills are somewhat related. Assistive technology provides different avenues for learning, play, and communication, especially for children with multiple challenges.

Career education: It may sound silly to think about career education when your child is so young, but there are so many foundational skills needed to be successful in a job setting. Starting very young, children can learn to find and put things away (organization skills), keep track of time (understanding routines and when specific things happen during the day, understanding the concept of hurry and wait), and develop recreation and leisure skills/interests that could turn into a job one day. Sighted children incidentally watch people in the community doing different jobs. A child with vision impairment needs to have more close-up and hands-on experience to understand what people are doing/wearing as part of their job.

* The core curriculum areas of math, language arts, science, and social studies can easily be incorporated into any of these domains. The Expanded Core Curriculum helps support learning in all areas.

Young children with vision impairment benefit from early exposure and opportunities to play with learning tools they will use for years to come.

A note to parents

From Mindy Doyle-McCall

(Parent of former student and Anchor Center physical therapist)

The whole idea of the Expanded Core Curriculum can seem overwhelming. Many parents will think, How can I possibly teach my child all these things? I have other children to raise, a job to keep, homework, house work ... Don’t panic! As with all things, if you break it down into smaller chunks it is easier to manage. The key is to think about what is most important to you and in the life of your child RIGHT NOW. What is the one thing that will make your life and your child’s life easier and build a foundation for the next step in development? This may be sleeping, potty training, eating a greater variety of foods, walking so he or she doesn’t need to be carried, or learning to play independently for 20 minutes so you can get a shower. No one can worry about everything all at once. The goal of this information is to help parents, teachers, caregivers/child care providers, and extended family think about important aspects of learning during your child’s early years. It is intended to help everyone in your child’s life understand how to teach a child with vision impairment, with or without additional disabilities. It looks different, but not impossible—just different. Most parents are already doing a lot of intentional teaching, incorporating these strategies into their daily lives instinctively and out of necessity.

It is absolutely important to think about what your child may need to know and be capable of doing as an adult, but it is equally important to consider what your child will be capable of a year or even a month from now.

Mindy and her daughter on preschool graduation day, 2009.

If your goal is just to make it through the week that is a valid goal! Ask for help and seek advice and support from therapists, teachers, and trusted family members. Most importantly, seek out parents who have been there, whose children have vision impairment and issues similar to your child’s. Believe in yourself and believe in your child. Look for support groups and take care of yourself.

Parenting in general is a challenging journey that requires ingenuity, persistence, patience, and love. There will be successes and failures, and a lot of trial and error. If you focus on that one important thing that will improve and enhance your child’s (and your) life right now, you will continue to make progress, and your child will reach his or her highest potential.

Each skill learned forms a foundation for another skill. The foundation of learning starts at birth and continues over a lifetime. Each child has a unique learning style, and will learn things at different rates and in different ways. Celebrate your child and what he or she brings to the world.

Section 1: Independent Living: Introduction

Overview of Independent Living Skills

Why is it important to think about independent living skills while a child is very young?

Independent living skills (also called life skills or activities of daily life) refer to the routines that are part of living and our daily rhythms. We get up every morning; we eat breakfast, lunch, and dinner around the same time each day; we get cleaned up, dressed, work, play, shop ... and eventually we go to sleep. These patterns and routines are universal and a part of all cultures. There may be variations, but the basic routines are consistent.

Every parent wants his or her child to develop the ability to handle the basic routines of daily life as independently as possible and on his or her own terms. Babies have an innate desire to make sense of the patterns of their daily life. Parents and caregivers can build on this innate desire and help even a very young child understand what is happening during daily routines. This lays the foundation for the child to develop independent living skills. The independent living skills acquired in early childhood can endure for a lifetime. Integrating core developmental skills into daily routines and maintaining these skills consistently serves as a foundation for developing more sophisticated routines as the child builds independence.

The primary independent living skills are:

Feeding/Eating

Sleeping

Dressing/Undressing

Toileting

Bathing/Self-hygiene

Organizational Skills

Understanding Time

Chores and Caring for Pets

Coping with New Places and Things

Telephone Use and Emergency Safety

Understanding the Concept of Money

Each of these primary independent living skills is discussed in some detail in the subsections following this Overview.

A child’s sensory efficiency and compensatory skills lay the foundation for the development of strong independent living skills. A child’s self-confidence, social skills, and choice of recreational and leisure activities are often shaped by the quality of independent living skills. An adult’s career choices and job skills are, to some degree, determined by the mastery of the range of independent living skills.

What do independent living skills look like in the life of a young child?

It can be a challenge to teach independent living skills to any child. However, a sighted child will learn simply by observing and imitating the activities of those around him or her. Teaching basic independent living skills and concepts to a child with visual impairment (and possibly other disabilities, such as hearing impairment, behavioral or cognitive challenges, and/or physical impairment) is a much greater challenge. It requires creativity, patience, and thoughtful adaptations by caregivers and parents.

Children with vision impairment are unable to see all of the steps while they are learning a new skill, so they will need some help in performing pertinent parts of the task.

Thus, parents of a child with vision impairment need to use strategies designed to:

Intentionally draw their child’s attention to the meaningful routines in his or her life.

Teach complex skills by breaking them down into simple components.

Provide numerous opportunities for skill building and practice.

Initially an infant is a passive participant in the routines of independent living. However, even an infant can be encouraged to actively perceive what is happening through listening, feeling, touching, smelling, etc.

As the child grows older and develops new skills, he or she will gradually become a more active participant. Every child develops independent living skills on his or her own timetable. Some children will quickly learn to feed themselves, get dressed independently, and will be toilet trained by the time they are three years old. Others will not be developmentally ready to learn these skills for another year or even two. Children with multiple disabilities may always require some assistance. They can still learn to contribute and actively participate in at least certain parts of the independent living skills process.

The most important thing to remember about independent living skills is that any child can still learn to help with part or a majority of the task. Even a child who may never be completely independent can be a contributing member of the household. Having at least some level of independence and control in life is extremely important for all of us, and young children are no exception.

General strategies to help very young children with vision impairment and other challenges develop independent living skills

It can be a big challenge for families to develop and maintain consistent routines. A sense of routine is comforting for children.

Keeping to a routine can be very difficult, particularly when a child has medical issues, the family goes on vacation, a parent’s work schedule changes, or the family’s living situation is altered (by a move or a divorce, etc.). Work as a family to create consistent routines and strive to stick to them. Children like knowing their usual bedtime and morning routines will be the same whether they are at home, spending the night with Auntie, or sleeping in a tent while on a family camping trip.

Teach new independent living skills as opportunities naturally occur, which helps your child understand the reason for what you are doing together. For example, while getting dressed in the morning, help your child learn to put his or her arms in the sleeves of a shirt. This provides a direct experience (putting arms in the sleeves of a shirt) AND a learning reason (I put my arms in the sleeve of my shirt to help get dressed). Another example is helping to set the table for dinner. While it may seem too demanding a task for a three-year-old, your child actually the needs the hands-on experience (with assistance) of participating in the activity. Understanding how and why to set a table is an experience sighted children get just by watching others.

Plan for your child to participate in age-appropriate activities that are similar to what other children of the same age are experiencing. For example, have your child help make simple cookies, or frost them. Use licking the spoon at the end as a reward for helping. Encourage tasting the ingredients at different stages of cookie-making. This actually helps a child understand concepts like how differently the cookie dough feels, smells, and tastes before and after baking. While the child with visual impairment must have this experience, all children will benefit and have fun. Also, this can be an excellent way to get a child with eating problems or food aversions to initiate tasting or tolerating food on his or her own terms.

Cooking activities teach children an important life skill and may help picky eaters learn to try new things that they helped create.

Pace your child’s participation to his or her tolerance level for other things happening in the environment. Remember, the Expanded Core Curriculum implies learning and experiences will occur in a natural environment. In many homes, the natural environment may mean lots of busy background activities and sibling interruptions, etc. Families can make adaptations as feasible. To limit noise, turn the television or music off when working on feeding. Work on dressing skills over the weekend when you are not as pressed to get everyone ready and out the door.

Make sure the child is motivated and ready to work on the skill you are trying to teach.If there is no motivation, or the child just does not have the motor or cognitive skills needed to do a task, it will be very frustrating for everyone involved. Take a step back and identify a precursor skill you can work on instead.

Interventionists trained in vision impairment can help parents develop adaptations and model instruction so parents remain parents first, not teachers.Model movements by moving with your child so he or she can feel how you are moving. Hold your infant close or use a front pack while you handle daily tasks; this will allow your baby to feel how your body moves while you are doing a task. Or, allow your child to feel the result of the task itself. For example, prop your baby in a laundry basket while taking clothes out of the dryer, and then pile the warm clothes around him or her.

Work from behind your child, so your child gets a whole body feel for the movements involved in a particular task. Use arm-under-arm movements and your-chest-to-child’s-back position for leaning and reaching. These techniques are especially important for helping the child understand how to initiate the movements involved in the task independently.

Use hand-under-hand techniques (hop on my fingers) as much as possible. This gives your child some control over his or her involvement and the best sense for how a task should feel when initiating it on his or own.

Hop on my fingers and we will do it together, provides your child with the freedom to move towards increased independence when ready—the child is able to slide his or her fingers off the adult’s fingers and take over a task as soon as he or she becomes aware of knowing what to do.

Hand-over-hand is a more traditional approach, in which the adult manipulates the child’s hands or provides physical assistance to help accomplish a task. This approach is most effective when a child is respectfully invited. For example, an adult may say, Let me show you how to wind the Jack-in-the-box. In some cases, the child will take the adult’s hand and position it when ready to be shown (modeled) how to perform an action.

While hand-over-hand learning is an important strategy, parents should remember the child might feel forced when his or her hand is grasped unexpectedly, or when the child does not initiate the gesture. Use songs, rhymes, or a toy to gently persuade the child to accept help, whether it be hand-under-hand or hand-over-hand.

Hand-over-hand can be useful when you are demonstrating the force of the grasp or push needed to perform a task. It may help to say things like, Let’s do this together, or Feel how hard I need to push/pull. At a minimum, the child must be alerted in some way that hand-over-hand instruction is about to occur.

Use consistent verbal cues and prompts. Try to stand in your child’s shoes in order to gain a better understanding of the vision and/or sense of touch he or she has. Do not hesitate to lie on the hard floor, or walk down a hallway making echoes. These exercises may help you better understand how and why your child is interpreting things in the environment. For example, you may understand why your child is frightened by a balloon bobbing on a string, or why vertical blinds or a ceiling fan are so mesmerizing for your child.

Seize teachable moments, such as when your child reaches for an object out of the blue. Take a moment and encourage the child to explore the object using eyes and body. Label the object and its properties using simple language. For example, That mixing bowl is smooth and shiny, or That’s daddy’s shoe, it feels bumpy on the bottom.

Use a hand-under-hand technique and sit behind the child to help him or her feel the procedure with the whole body. This is much better than a hand-over-hand technique, which may make the child focus more on the hands being touched instead of the task you are trying to teach.

Offer positive reinforcement in a way that will help your child understand specifically what he or she did correctly. Be explicit. For example, you may say, You put a spoon in each bowl. Just what we need to eat our cereal. Or, You took off your own socks—great job! Saying only, Good job without explicitly stating what was good may be confusing. For example, saying, Good job when the child starts to pull up pants after