Creating Programming for Learners Who Are Deafblind with Significant Additional Disabilities
Individuals who are born with both vision and hearing loss and who also have other physical, cognitive, and medical challenges present intensive and unique challenges for educators when they are developing programming. There is no one-size-fits-all approach, but there are some best practices to guide the development of quality programming for these individuals.
Deafblind with Additional Disabilities Menu
Identify the best time(s) for instruction
These children may have difficulty achieving and maintaining an alert state necessary for learning. Their level of alertness waxes and wanes throughout the day and changes frequently depending on overall health, medications, feelings of safety, and interest in what is going on. Conducting a biobehavioral state assessment helps the team determine the times of day and length of time for an activity. One goal of education for these children should be to increase their stamina and interest in engaging with things, people, and activities.
Take time to develop trust and security
There is nothing as important as taking the time to develop a bond of trust and security with these children. The lack of (or reduce access to) visual and auditory information brings with it a certain degree of chaos for these children. It is up to the adults in the child’s life to bring order to a world where things seem to happen without explanation or warning. First the child has to feel safe and trust that we (and the world) are not about to hurt him or her. These children have generally endured a great deal of medical interventions and been startled by the fast-paced interactions with most humans. Slow down your interactions, give the child time to anticipate and agree to what comes next, don’t make demands, and follow the child’s lead and interests.
AND give yourself a break! Developing this bond of trust may take some time. Each child is different and has a different level of resilience and emotional maturity. You may want to review Interaction and Bonding pages on this website for more information.
Assess skills in all areas of instruction
Like any other student, these children should have a thorough skills assessment and a clear Present Level of Academic Achievement and Functional Performance (PLAAFP) should be developed. It is important to build on existing skills to address the students needs. (You may want to visit the Program Planning pages on Active Learning Space to learn more about assessment and development of the IEP.)
There are also mandates that every child have an opportunity to access the general curriculum content that is available to his/her peers. For many teachers, this seems like a daunting task. The good news is this content must be adjusted to fit the child’s current developmental levels in fine and gross motor skills, language arts skills, social and emotional skills, cognitive skills, and other sensory skills. For most of these children, this means instruction centered on important foundational concepts such as cause and effect, object permanence, quantity, size, shape, weight, family roles, spatial positions, and so forth. The trick is to make it interesting and accessible for these individuals who have so many challenges.
There are a variety of assessment tools that can be used, but one that is very helpful for children who are extremely developmentally delayed is Dr. Lilli Nielsen’s Functional Scheme. Other tools that can be used include the Communication Matrix, Home and School Inventories of Problem-Solving Skills, and Every Move Counts. This along with assessment information from the physical and occupational therapists (OT, PT), speech-language pathologist (SPL), orientation and mobility specialist (COMS) help to develop a clear picture of the child’s functioning in all areas.
Of course, assessing sensory functioning is critical. Tools such as the Informal Functional Hearing Evaluation (IFHE) , Early Tactile Learning Profile, Essential Tools of the Trade for Deafblind: A how-to guide for completing evaluations, along with the assessments done by the teacher of students who are blind and visually impaired, teacher of students who are deaf and hard of hearing, and related service staff (PT, OT, SPL, COMS) provide a great start to understanding the child’s sensory functioning. At the same time, nothing beats observation and diagnostic teaching. It takes time, quite a bit of time, to understand what the child can actually access in any educational setting or activity.
Prioritize goals of instruction
Priorities for helping the child achieve maximum involvement in family life and skills that lead to quality life outcomes as adults should be identified. For example, the family might feel that if the child could undress, feed with independence, move about safely in the environment, and enjoy engaging socially with others, life would be better for the child and family. Educators can see these areas as priorities and determine what skills the child can work on to improve his/her functioning that will lead to these goals over the course of a school-year.
Educational professionals also have expert knowledge about other skills that are necessary to meet the families priorities. For example, feeding requires the child to be able to find the food on his plate (orientation, use of vision and/or touch), grasp, scoop, and pierce with a utensil or pick up with his hands (vision or touch, motor) , chew and swallow the food (oral motor) , and grasp and hold a cup or bottle (vision or touch, motor). These skills are what guide the development of annual goals and objectives.
Develop a consistent and rich schedule of activities
Many children, especially those who are medically fragile, lack stamina that allows them to achieve and maintain an alert state necessary for learning for long periods of time. However, if we identify the best times for engagement and build learning experiences around things that motivate the child eliminating as much as possible those things that are aversive, children often develop greater stamina. As much as possible set up the environment so these children can engage in independent exploration at every opportunity. Consider some of the learning activities found on Active Learning Space to help you get started. Many of the activities of daily living can be enhanced to engage the child more and to make these activities opportunities for skill and learning development.
When the child is unable to move his or her own body easily, engage in shared movement such as rocking, patting, clapping, and vocalizing. Many educators in the field of deafblindness use the term “resonance” activities to describe these activities. The stronger the child’s body becomes and the better the child is able to move, the greater the likelihood of engagement.
It is important to remember that one response to boredom or aversive situations is to shut down. Sometimes we assume the child is sleeping because they are tired, when actually they are not being engaged appropriately.
Just like you and me, these children have good days and bad days. When the child is distressed, in pain, ill or taking medications that cause side effects they may not be able to perform in the same way they do when they are feeling great! Good communication between home and school and between staff working with the child is important to reduce the child’s distress and our frustration. Most of these children cannot handle demands, even on a good day. Be a good playmate and let the child guide activities and interactions.
Do with not for
Encourage the child to do as much as possible within his or her demonstrated skill set. This means allowing plenty of time for the child to take action. Many of these children have neurological systems that cause them to need more time to process and respond. When a child is not able to do something, rather than doing it for him or her, do it with the child. Utilize hand-under-hand techniques as you model the step or action you are taking. Acknowledge any attempt on the child’s part to participate — the slightest movement, vocalization, etc. As much as possible, let the child have time to explore all the materials you use in an activity through any of the available senses he/she can. For example, give the child time to feel the diaper, smell the lotion, touch the toothbrush with his/her mouth before you complete a step with that material.
A note for families: Sometimes you don’t have time to do with and not for; we get that. Managing the needs of the entire family is challenging. When you do have time to “play” let your child have opportunities to engage with the objects and materials they will encounter in all those activities of daily living or recreation and leisure activities. For example, let them play with multiple types of toothbrushes (big, little, electric, manual, different shapes and textures) so they can become more familiar with these when you bring out their toothbrush to brush teeth. Play in and with water in tubs or pools with soap, wash clothes and sponges, and squirt bottles so that bath time is less threatening. Play with oversized clothes (hats, shoes, shirts, etc.) so that dressing and undressing becomes easier. Check out some of the activity ideas on the Expanded Core Curriculum pages of Active Learning Space.
Document progress and revise programming regularly
Documenting progress is perhaps the most important aspect of any quality program. If you are not seeing progress, find out why. Do the materials need to be modified? Is the child able to build on skills he/she already has in working towards new skills development? Is the child having fun and actively engaged in the activity? If not, how can you make it more enjoyable? These children struggle so hard to learn already, we need to get it right as quickly as we can.
Videotaping activities regularly for the team to review is a must! This will help you to see what the child is doing for one thing, but more importantly what the adults need to do to make the activity work better. These children can be difficult to figure out, so their program activities often take tweaking to really make them work. At a minimum, all activities should be reviewed for progress on a bi-weekly basis to see if the child is making any progress towards the IEP goals and objectives. This means that the activities must focus on these goals and objectives throughout the day. Check out Documenting Progress on Goals and Benchmarks on Active Learning Space. You can also find a form there to track progress.