American Action Fund for Blind Children and Adults
Future Reflections
       Summer 2021     TEACHING AND LEARNING

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Supporting the Person, Not the Diagnosis: Blindness and Additional Disabilities

by Carol Castellano

Carol CastellanoFrom the Editor: Carol Castellano's commitment to blind children and their families runs long and deep. She has served as president of the NOPBC, and she is the founder and former president of the New Jersey Parents of Blind Children (NJ-POBC). She is the author of Making It Work and Getting Ready for College Begins in Third Grade. This article is based on a presentation she gave at a recent NOPBC webinar.

I am the mother of a now-grown blind daughter who began life with multiple disabilities due to extreme prematurity. In addition to becoming blind, she was seriously undersized. She had muscle weakness and developmental delays. At one year of age she could not sit up; at age three she could not chew solid food; at five she still could not talk.

Hopes for our daughter's future were not high among the many professionals in our lives. She was even rejected by a special-education preschool that told us her needs were too great.

There we were, with an extremely delayed blind child who was perceived as so far gone that not even special education could deal with her. People were giving up on our daughter. They told us we were in denial for having hopes for her future.

I tell you all this to let you know that the subject of blind children with additional disabilities is near and dear to my heart. My daughter is an adult now, and she still has a few "prematurity leftovers" as we call them at our house. However, with a lot of hard work and with the good team we finally managed to assemble around her, she was able to develop in every area.

The term "blind child with additional disabilities" can mean countless things. The child might be totally blind or might have partial vision; the additional disabilities could be motor, cognitive, neurological, or medical. The disabilities may be part of a syndrome, and they may be mild or severe. Because so many possible combinations exist, I will offer some general ideas that apply to all kids. I hope that some of these ideas will help with your child's development.

Accentuate the Positive

Regardless of which conditions our kids have, it's important for parents and teachers to have a positive approach and to keep their expectations high. A can-do attitude can bring about great results. Please remember that the presence of additional disabilities does not mean that the child will never learn to read, move independently, use a computer, or learn other important life skills. Keep all the doors open for learning and developing.

Make Life Interesting

One of the most important things we can do for our kids at home and at school is to create a stimulating environment. A stimulating environment is one filled with things that will interest the child, things that will lead the child to touch and move and explore.

Watch small children as they explore without intervention from adults. When they come across an object, they pick it up, turn it around in their hands, put it to their mouths, pass it from one hand to the other, bang it on the table, drop it, or throw it. Without conscious planning they do what comes to them naturally. In the process they are learning about the characteristics of the object, and they are gaining this information themselves. No one is telling them about the object or explaining how it should be used. We call this exploration play. Play is how children learn.

Our blind kids with additional disabilities often need a bit of help with this stage of development. Maybe they are very passive or physically weak. They may seem totally uninterested in the things around them, off in a world of their own. It is very important to get exploration going, and a stimulating environment can make it happen.

You might have to experiment to find out which kinds of things interest your child. Your child may like certain textures or materials or sounds. The idea is to make items available that are irresistible so that your child can't help but touch them.

Active Learning

Some children benefit greatly from the Active Learning approach created by Dr. Lilli Nielsen. I highly encourage you to look into Lilli's writings. She suggests a wealth of materials and ideas that can get your child going. Lilli Nielsen's best-known technique is the use of the Little Room.

The Little Room is a three-dimensional frame set upon a thin sheet of wood called a Resonance Board. The frame is high enough to allow the child to sit upright, and the child also can lie on the floor. An assortment of objects is hung from the top and sides of the frame—things that will make sounds if they are touched or moved even slightly. Some examples include metal measuring spoons, plastic cups, strings of beads, or bells. For further information on how to select and hang objects in the Little Room, visit https://activelearningspace.org/equipment/purchase-equipment/little-room.

The Resonance Board forms the floor of the Little Room. A low rim beneath it on all sides raises the board slightly above the floor. It will echo whenever it is touched by a little foot or hand.

Now the stage is set—the baby or child is placed inside the Little Room on the Resonance Board. The dangling items have been arranged so that the child's tiniest movement will bring them into contact with something that makes a sound.

I have seen babies and children who have been almost completely passive come to life in a Little Room. First they make random movements. By chance they touch something and make a sound, or they make a sound by moving a foot or hand on the Resonance Board. Eventually they move purposefully to make those sounds occur! I've seen a child go suddenly quiet and intent, and then . . . the smile! This is the beginning of intentional movement and play, and this is exactly what we want to happen!

Our goal is to create an environment that encourages the child to touch, move, explore, and learn. When I say learn I am talking about self-directed learning. Self-directed learning is quite different from adult-directed training that fills the child with someone else's knowledge. Lilli Nielsen emphasizes that the desire to move and touch must come from the child's own brain, not from the mind of an adult.

Lilli Nielsen suggests many objects that can stimulate movement and action in blind children. Offer a string of beads to be clattered on a Resonance Board. Experiment with things that vibrate. Give the child an old pocketbook with lots of snaps and zippers.

Here are some more ideas parents and teachers can use to get the child to focus attention and become engaged in an activity:

All of these experiences can motivate a child to pay attention, touch, and take action. Learn which items work best with your child.

Make sure, of course, that whatever you set up does not overwhelm the child. We want the response to be enjoyment, not overload. If the child shuts down, pay attention!

Sensory Integration Training

Speaking of overload or shutting down, another approach that can assist many of our children in their development is a branch of occupation therapy (OT) called sensory integration training. Sensory integration training seeks to enable the child to integrate and interpret the information that comes in through the senses.

Some children have trouble using the information that pours in through vision, touch, hearing, and the kinesthetic senses. They become overwhelmed, and they may shut down or become distressed and agitated. When sensory integration takes place, the child is able to feel comfortable and respond appropriately. Sensory integration therapy can be helpful for children with conditions that impede playing, paying attention, feeling comfortable in unfamiliar environments, and interacting with others. It can help a child who experiences other sensory integration issues that create obstacles to learning. (For more information, see "Maybe It's Not Because They're Blind: How Sensory Integration Exercises Can Help Our Children," https://nfb.org/images/nfb/publications/fr/fr38/4/fr380407.htm.

Developmental Charts

You have probably been introduced to developmental charts by your child's early intervention specialist or other professionals. Developmental charts can help parents and teachers figure out the Next Logical Step to work on in the child's development. The chart includes categories such as gross motor development, fine motor development, speech, social-emotional development, and self-help. Parents can choose a category and see where their child stands. Maybe the child has mastered the first two items in one category and the first four in another. You can work on the third item in Category A and the fifth item in Category B. These will be the Next Logical Steps.

It is easy to feel overwhelmed when your child has a lot of developmental needs. Developmental charts can help parents recognize the areas where their child is making progress. The chart can help parents feel less overwhelmed, taking things step by step. 

Sometimes it is helpful to observe other children who are your child's chronological age and who are at your child's developmental stage. What activities are they doing? Can you set up an environment that could help that activity occur for your blind child? For example, when my sighted son was two, he climbed into one of our kitchen cabinets and began joyously banging on the pots and pans. I realized that our five-year-old blind daughter had never played in the cupboard. I encouraged her to get into the cupboard with her brother so she could enjoy that developmental experience, too.

You might have noticed that I referred to your child's "chronological age" or "developmental stage." In this organization we talk a lot about the need for blind kids to have age-appropriate knowledge and age-appropriate skills. For our blind children with additional disabilities it can be helpful to think in terms of "stage-appropriate" knowledge and skills. Regardless of chronological age, your child might be at a two-month or two-year level in one developmental area and a four-month or four-year level in another. Look for activities that might work for them at those age levels in various areas and go from there.

All of these learning opportunities are important because they can help our kids learn to gain information about the world for themselves. They can learn to gather information through all the senses and abilities available to them. By coming into contact with interesting objects and making things happen when they touch them, our children begin to see themselves as active agents in the world. They become doers, not just done-toers. (Credit for that phrase goes to early childhood O&M instructor Joe Cutter.) For more ideas on how to get your child moving and exploring, I encourage you to read Joe Cutter's book Independent Movement and Travel in Blind Children: A Promotion Model (available for $30 from the National Federation of the Blind's Independence Market at 410-659-9314.

Blind children—and especially blind children with additional disabilities—are very vulnerable to being acted upon. People grab them, move them, steer them, guide them, restrain them, or push and pull their hands. We want our children to be active and not passive in their own lives. We want them to develop the ability to make choices, to hold the expectation that they can make decisions. We want them to have some control over their environment and their lives. We want them to expect that what they feel and what they want (or don't want) have meaning and value.

Some Thoughts about School

You probably know that blindness in children is a "low-incidence disability." This means that there aren't many blind children out there. When we add additional disabilities into the mix, we get into smaller and smaller categories. The chances are that your school has never seen anyone quite like your child.

In the NFB we have a pretty unique approach to the education of blind children. Sometimes when school officials hear our approach, they almost fall out of their chairs. For starters, we tell the team to forget that the child is blind. That's the part that makes them fall off their chairs, because many times the child's blindness is all they can see! We tell them to take blindness out of the equation and look instead at the learning profile of the child. What would you plan for that child if he or she were not blind? This approach can keep decisions from being based on low expectations and incorrect assumptions about the abilities of blind people. It is all too easy to shortchange our kids.

We also tell the team that blind children need and deserve the same information and education their sighted peers receive. We want them to develop in all the "regular" areas—motor, speech, concepts, self-help, etc. Furthermore, we want them to develop in the areas specific to blindness, learning how to get information nonvisually or with limited sight. They need to learn to explore with their hands, to listen with attention, and to use their residual eyesight effectively. They need to develop listening skills, memory, and mental mapping. They will need to learn to read Braille or large print, to travel with a long white cane, and to use access technology. These skills help ensure that our blind children will have full access to the education that is available to their sighted classmates.

We tell the schools that blindness alone should never determine whether a student can be expected to learn a certain subject or master a particular skill. Educational plans for a blind student must be based on the child's learning level or developmental profile, not on how much eyesight they have.

It can be hard for educators to untangle the strands. It can be hard for parents, too, especially at the beginning. We certainly don't want additional labels plastered onto our kids. The tendency is to blame everything on their blindness—speech delays, motor delays, and everything else. The assumption that blindness is the problem can keep the child from getting needed services in the areas that actually cause or contribute to delays.

The tendency to underestimate the child's abilities based on blindness can make it difficult to get a fair evaluation. The child's real aptitudes can remain hidden. Placement decisions can also be subject to negative preconceived notions about blindness. Placement decisions must not be based on eyesight alone. Talk to the team about what they would plan for this child if he or she were not blind.

For school purposes, it can be helpful to do the following:

For the approximately one-third of blind students who have no additional disabilities, this approach means that academic goals and expectations will be the same for the blind child as they are for the sighted children in the class. This parity in education is possible when the blind child receives proper training in the specific skills and tools of blindness such as Braille, cane travel, and access technology. Furthermore, materials and the presentation of information must be fully accessible.

Another third of blind children has a moderate additional disability that affects their education in some way. For these students we need to modify academic goals as necessary, just as we would for sighted students with comparable disabilities. Again we would add blindness skills, accessible materials, and presentation in accessible formats.

The final group of blind children has severe additional disabilities. For these children we plan more individualized or developmental IEP goals, just as we would for sighted children with similar learning profiles. As always we would add blindness skills and materials and presentation in accessible formats.

We must set academic or developmental goals for all blind children just as we would set them for a sighted child with a similar learning profile. Then we add the skills, tools, and materials that are specific to blindness. Decisions about what the blind child will learn and where they will learn it should not be based on their visual acuity.

Incidentally, Braille should be included in the education plan, even for children with pretty serious additional disabilities. If a sighted child with a similar learning profile would be placed in a literacy program, the same applies for the blind child. For all our kids, accessible materials can allow meaningful inclusion in all activities.

A Word about Communication

Every child has a personality. Blind children with profound additional disabilities have their likes and dislikes; their favorite toys, games, songs, and outings; their ways of showing excitement, irritation, curiosity, and love. Kids who cannot communicate with words may use a variety of sounds or movements to get your attention or to respond to a situation. Make sure teachers understand how your child communicates and what their various sounds or movements might mean. This information can help keep the child from being underestimated by those outside the family. Augmentative communication devices can be adapted for blind kids.

I believe the IEP of every blind student should include an explicit goal of independence. The program should be set up so that the student can become more independent each year in every possible way. Our kids are vulnerable to overprotection and learned helplessness. They need to have the same freedom and autonomy as sighted children with the same learning picture so that they can develop the same level of independence. Make sure teachers provide opportunities for the blind child with severe additional disabilities to make choices whenever possible and to act upon the world, not always to be the one acted upon.

In every area of life, from development to play to self-help to academics, approach teachers and other professionals with a positive attitude. Keep expectations high, and keep all the doors open for development and learning.

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