Texas Deafblind Project staff members, Robbie Blaha and Kate Moss Hurst, have pulled together information and designed a procedural document to guide educational teams in developing programming for these students who present intense challenges to educators.
Our target population
This document is designed to help educational teams working with a specific group of children who are deafblind and have additional, significant disabilities. This would include children who are medically fragile or have other physical issues that greatly impede their ability to actively participate in learning activities for even short periods of time. This form is not intended for students who are already actively engaging in various learning environments and with a number of people throughout the day.
This procedure focuses on gathering information for program development for the individual student. It is not intended to replace any evaluation or assessment that is part of the child FIE (full and independent evaluation) required by IDEA.
It is important to note that some of the content document can also be very useful for clarifying a positive educational approach for children who are less involved physically, but are difficult to engage. Most of the questions included in the interview portion of the document apply to children like those we have described above. We have the expectation that, at some point when appropriate programming is provided, these children will become able to maintain an alert state for longer and longer periods of time. For this reason, we have also included questions more applicable to children who are already able to achieve a quiet alert or active alert state for short periods of time throughout the day. These questions appear in the question boxes that are shaded gray.
Deafblind with Additional Disabilities Menu
Children who are Deafblind with Additional Disabilities
Internal Versus External Issues
Fight or Flight and Rest and Digest
Role of Social-Emotional Development
Determining Social-Emotional Development Level
These particular students may be experiencing extreme distress, especially in unfamiliar environments, within new activities, or with unfamiliar people — which makes learning difficult. They may also have medical issues that make achieving an alert state impossible some days (or for some periods of the day). This can be a result of pain, side effects of medication, allergies, or frequent illnesses.
Educational teams should determine which portions of the interview are relevant for a particular student. They are encouraged, however, to consider all areas of this form when developing programming:
- Medical Issues
- Biobehavioral States
- Orienting Reflex
- Social Emotional Behaviors
- Appetite and Aversion
How long does it take to complete?
This procedure is not intended to be completed in a single day or even a single week. It may take a month or more to gather all the information you need to develop a quality program for a specific learner. However, each bit that is learned about your child or student will be immediately helpful in developing trusting relationships, beginning to maintain a more alert state for learning, and helping the team to learn what motivates the student to engage. More importantly, this information will help the team develop better programming for the student.
We include some additional resources on the final pages of this document that you may find beneficial when working with these students. Please check these out.
Download the document
We encourage you to download the document Assessment Procedure for Students who are Deafblind with Significant Additional Disabilities to be able to compile and document information about the learner.
Start with a family/caregiver Interview
It is always a good idea to begin any assessment with the family. Their knowledge of the child is indispensable to the process. It may be difficult for the family to fill out a form or a survey without some guidance. We have found that face-to-face discussions and open-ended questions work best. Begin by asking them to describe a typical day and talk about the things, people, and activities that the child enjoys the most and least. Pay attention to the actions or objects they mention.
It is also a good idea to gather information from teachers, para-educators and others who know the child very well. This might include former teachers, daycare workers, nurses and other extended family members who know the child very well.
Be sure to ask the questions related to medical issues, medications, and side effects. In this document, we have included a form to suggest questions to aid in the interview process.
Complete a biobehavioral state assessment
In addition to what is learned form the family interview, it is important to gather information about the child’s ability to attain and maintain a quite alert or active alert state to periods of time that facilitate learning. In the protocol document we have included an observation tool to guide that assessment process. We have also included other specific resources to use in biobehavioral state assessment.
Determine preferred sensory learning channels or pathways
Dr. Lilli Nielsen uses the Dynamic Learning Circle to describe the process that takes place as the child moves from awareness and interest (stage 1) to curiosity and activity (stage 2) before completing their learning or habituating (stage 3) and becoming ready for learning something new (stage 4).
Initially we look at what we know about the child’s disabilities to pick a channel that most likely will elicit the child’s attention and interest in engaging with an object, person, or learning environment. It is important to understand which sensory pathways are available to the child and how well they can use them. For example, a child with CVI, a moderate hearing loss, and cerebral palsy may have the potential to use visual, auditory, tactile, gustatory, olfactory, and proprioceptive input to greater and lesser degrees to alert to things in their environment. They might prefer to engage with things and people primarily through touch or auditory channels.
Here is one way to think about the availability of sensory pathways. Imagine each sense as a circle. How much of the circle is available for the child to use to alert and/or engage in learning through his/her own actions?
In the graphic to the right we show what is available via specific sensory pathways for a learner who has cortical visual impairment, a moderate hearing loss, and cerebral palsy. Make an estimate of each of the available learning pathways: vision, hearing, touch, taste, smell, and proprioception. This information may come in part from formal assessment information as part of the full and independent evaluation (FIE) required in IDEA, but it most often comes from observation of the child in various environments and with various people. Remember, for many of these children, their best functioning takes place in the home with familiar people. That is why dedicating at least some observation time to the home environment can be extremely helpful.
Determine which sensory pathways alert and which engage
A learner might alert to a particular type of sensory input, but not necessarily use that pathway to learn. An example might be that a child with cortical visual impairment who alerts to visual information such as shiny objects, but learns best through her tactual sense. It is important to determine which senses alert the child and which move the child to engage.
Determine intensity of input
Within the best sensory pathway(s) available for alerting and engaging, we need to also determine the intensity of input. For example, a child might alert to music, but shut down if the music is too loud or too soft. We know that some conditions may cause the child to be overly sensitive to certain tactile input such as fixating on the label in his shirt or responding negatively to light touch. Consider the intensity of input that is optimal for the child’s best pathways for learning.
Determine the child’s ability to process multiple sensory input
Many children who are deafblind with additional disabilities also have difficulty using multiple senses simultaneously. This is why we have to accept that once the child engages, competing sensory input can stop learning.
Observe the child and make note of how the child is able to use multiple senses simultaneously. For example, can the child look and touch an object at the same time? Your physical therapist and/or occupational therapist can help you in this process.
If the child tries to engage in a learning activity, does certain visual, auditory, tactile, olfactory, gustatory information derail that engagement. For example, if someone comes in the room with a soda that the child likes, does she stop engaging in the activity and become fixated on drinking soda? Does the cry of another student end the child’s engagement? When you begin to develop activities and design learning environments you want to avoid or at least reduce these distractions as much as possible.
Refine your knowledge of the child’s appetites and aversions
Once you have initial information provided by the family and others, begin to observe the child’s responses by offering objects, activities, and environments that might elicit a positive response. Collect a large number of objects or props (as many as possible) to use that offer various types of sensory feedback; don’t limit yourself to just a few.
Make note of any responses from the child that indicate a “fight or flight” or elicits an alert or engaged response. You may also want to make note of anything that causes a “rest and digest” response since these do not hold a potential for learning.
Use a chart like the one below to list items, properties/qualities of items, actions, and people that that elicit a response. Indicate whether the response indicates an aversion or appetite and whether the learner just alerts or engages. Below is a partial example for the child we described earlier with CVI, CP and moderate hearing loss.
Item/Property, Action, Person
Susie began to cry when we rocked her from side-to-side, but only fussed at a back and forth movement. She really perked up and seemed to indicate pleasure by vocalizing when we showed her the mylar balloon, started signing a familiar country song, and bounced her up and down in our laps.
Collect data and refine your practice
Working with these children means we have to take frequent data and adjust our instruction in response. Rarely do you set up a program for a child that works perfectly right away. Use a diagnostic teaching approach formulated by the team. Infuse focus skills into activities so the child has many, many opportunities throughout the day to practice and engage. If one type of material or approach does not seem to engage the child, make some slight change based on what you have learned about the child’s particular appetites and aversions. Then take more data to see if you are on the right track.
It is a good idea to video the child frequently during times of activity. Try to capture the child in both independent play and adult-child interactions. This way the team, including family members, will have an opportunity to review the video and observe whether or not their is an increase in activity and learning. Teasing out information about sensory pathways, orienting or alerting response versus engagement, properties or actions that create engagement, and the child’s skills in using various sensory information alone or in combination can take time. Reviewing a video tape multiple times allows you to look and reflect on the child’s responses.
Collect data on your observations over a period of time, perhaps 2-3 weeks before beginning to design a regular schedule of learning activities or environments. Target times when the child has the best chance of being in an alert state. Make note of ways to help the student shift into an alert state from other states that are not conducive to learning. For example, does the child need to have arms and legs brushed with a therapy brush before a particular activity.
This type of observation should continue throughout the year every week or so. As your knowledge of the child grows and trust develops, you may see new skills emerge. You may also see better use of other sensory pathways as the child develops familiarity with the environments and people he/she encounters. Things that at one time were aversive might change and sensory information that was interesting might lose its appeal.
Pay attention to habituation
Habituation is what occurs when something is no longer novel, interesting, or engaging. You can see this in the child when they seem to lose interest in an activity or object that once engaged them. They may start to repeat actions they have mastered in a disinterested way. For example, the child who repeatedly hits a button on an electronic toy without waiting for the toy to complete its action. These are indicators that the child is ready for us to add some novelty. Just a little — by the teaspoon not not the pitcher full.
Finding the correct balance of the familiar and novel is our challenge. With good programming the child will hopefully learn to use each sensory pathway better and overcome some of the extreme responses to things that were initially off-putting or uninteresting.