Presented by: David Brown, Education Specialist, California Deaf-Blind Services, San Francisco State University
Ways & Means: Case Study
The student
- 8 years old girl
- Multiple health issues with many early surgeries & hospitalizations
- Suppressed immune system – frequent infections
- Severe balance issues, with delayed age of independent walking
- Fed completely by G-tube
- Some hearing – she has some speech perception with amplification
- Lip reader
- Primarily an American Sign Language user
- Visual acuities 20/400 in both eyes + visual field loss
School
- Program for deaf students with additional disabilities
- The Director of the service was flexible, imaginative, persistent, and supportive of students and staff
- Large support team (e.g. Deaf Teacher, Behaviour Specialist , Physiotherapist, Occupational Therapist, Speech Therapist, Adaptive Physical Education Teacher, Nurse, Psychologist, Sign Language Interpreter, Social Worker)
- High ratio of adults to students in the classroom
- Teachers & aides were all very highly qualified and experienced
- Strong emphasis on communication and language
- Total Communication approach, plus some ideas from the literature on CHARGE (eg. daily schedule of symbolic objects & pictures)
- Student had her own aide due to behavioral issues
- High level of academic expectation in the class
- Student spending increasing proportion of the day in individual activity with her aide because group sessions were very challenging for her
- Challenging behaviors were increasing in severity & frequency
The issues
- Often impulsive in behavior – e.g. escaping and running away, sweeping tables clear of objects, throwing objects, physical attacks on adults and (especially) other students
- All the above behaviors could also be used with intention in a planned way
- Alternation between extreme passive compliance and extreme non-compliance – described as “wanting to please people and wanting to upset and hurt the same people”
- Clearly an intelligent student yet also with perceived cognitive issues – e.g. unable to attend for long, unable to retain or generalize concepts learned, huge variability in skill level (from moment to moment and from day to day)
- Strong dependence on familiar, predictable routines, with behavioral outbursts if her expectations were not met
- Ritualistic behavior in familiar activities
- Frequent insistence on getting horizontal on her back on the floor and being left alone for short periods of time
Before my visit – what had worked?
- Providing a ‘safe area’ next to the window for her ‘horizontal’ periods
- Increase in the number of Adapted Physical Education sessions per week because of the beneficial after-effects of these sessions
- Daily calendar of objects & pictures
- Sessions with her favorite aide in the classroom (who was not her official 1-on-1 aide)
- Increasing the time spent in individual sessions with less time working in a group
- Being taken for a walk around campus after more severe behavioral events or outbursts
Before my visit – what had not worked?
- Physical restraint in a chair
- Being taken for a walk around campus after her more severe behavioral events or outbursts
- Extending the duration of a lesson to complete the task if it had been disrupted by her behavior
- Limiting the availability of time with her favorite aide to reduce the risk of her developing ‘over-dependence’
- Limiting & scheduling the availability of the ‘safe area’ next to the window for ‘horizontal’ periods
- Behavior plans (from 2 different specialists) that depended primarily on the use of punishers & on a token system
- Intensifying homework to facilitate better academic achievement & attention in class
My perception of what was wrong
- There was no recognition that this is a student with deafblindness
- There was too much pressure to ‘perform’ like her peers who are ‘only’ deaf, because she is a clever girl with very good adaptive skills, so her challenges were easy to miss or easy to under-estimate
- Failure to consider her individual motivators, and then use them within appropriate areas of the curriculum
- Failure to recognize her extended processing time and processing strategies (e.g. standing up to pay attention and learn, walking around the room briefly to process)
- Insistence that the student sit upright on a regular chair at a regular table for working on many areas of the curriculum
- Not understanding the need for her to move and vary her position, and to perform tasks that provide strong proprioceptive input, to assist with her poor attention and poor self-regulation (& postural insecurities)
- Expecting the student to work at the thresholds of her sensory abilities most of the time
- The deliberate involvement of a variety of adults to prevent over-dependence on one adult in the school setting
- Team anxiety about using the “follow the child” idea in case this would spoil her, or increase her non-compliance
- Persistent use of behaviorist methods to control noncompliance and impulsivity, using a succession of practitioners, none of whom had familiarity with CHARGE, nor with deafblindness, “….which just made the problems much worse”
What improved the situation?
- The label of ‘Deafblind’ – opening access to appropriate expectations, assessment approaches, teaching strategies, and resources
- Provision of an Intervener (who was already her favorite adult in the school)
- The use of the student’s individualized motivators in as many curriculum areas as possible
- “Follow the child” as a guiding philosophy
- More careful ‘reading’ of the student by staff, to identify and notice the precursors of stress, tiredness, and over-arousal (and ideas about what to do in response to these problems)
- Involving the student in making a Personal Passport so that other people (adults and peers) from outside the class could ‘tune in’ to her quickly and appropriately
- More precise, carefully chosen, & carefully presented, choices so that the student could feel more empowered and in control, and not so threatened and confused
- Provision of information and ideas about the vestibular and proprioceptive senses, and their impact on behavior (especially on attention and arousal), then putting this knowledge to use in both structured and opportunistic ways (involving Adapted Physical Education, Occupational Therapy, and Physiotherapy specialists)
- Involving the student in making a Personal Passport so that other people (adults and peers) from outside the class could ‘tune in’ to her quickly and appropriately
- More precise, carefully chosen, & carefully presented, choices so that the student could feel more empowered and in control, & not so threatened and confused
- Provision of information and ideas about the vestibular and proprioceptive senses, and their impact on behavior (especially on attention and arousal), then putting this knowledge to use in both structured and opportunistic ways (involving Adapted Physical Education, Occupational Therapy, and Physiotherapy specialists)
Presenter Information: David Brown is an itinerant teacher of children with deaf-blindness, and has worked in the field of special education since 1976. He first met a child with CHARGE syndrome when he joined the Sense organisation in the UK in October 1983. Since that time David has worked with a great many people with this syndrome. He has given presentations at the CHARGE Syndrome Foundation conferences in the US since 1995, at the Australasian CHARGE Association conferences since 1996, at the German CHARGE Syndrome conferences since 2008, and at the French CHARGE conference in 2004. He has also lectured at CHARGE meetings in 15 different states of the US, and in Canada, the UK, and India. David has published articles on various aspects of CHARGE (many translated into French, German, Italian, Dutch, Danish, Greek, Japanese, Hebrew, Norwegian, Finnish, Portuguese, Russian, Swedish, and Spanish) in ‘Child: Care, Health & Development’, ‘Deafblind Education’, ‘Talking Sense’, ‘reSources’, ‘Deaf- Blind Perspectives’, ‘Fruhorderung Interdisziplinar’, ‘the American Journal of Medical Genetics’, ‘DbI Review’, and ‘CHARGE Accounts’. He has also contributed chapters to the first two books about CHARGE, published in Germany in 2009 and in the USA in 2010.
