Previously Submitted Questions (most recent first)

Can you help me determine if an 11-year-old, blind child's skipping behaviors are related to the need for proprioceptive input? Also, he is "getting into trouble" for chewing on food much of the day. What might be going on there?

Question:  I work with a child who is 11 years old, congenitally totally blind, no other disabilities, highly gifted in school and spent the first 4 years of his life in an orphanage in another country. When adopted he could walk, but there were reports that at the orphanage he wasn't allowed to move around much and had to stay on his bed for most of the day.

I've worked with him since he was 4 and never really noticed any major proprioceptive and/or vestibular impairments, but as I was listening to your recent conference presentation he kept popping into my mind. He never displayed "hand flapping" or rocking, and he walks with a pretty even gait, BUT as he is walking he will just start skipping...I always thought maybe it was because he was just this happy-go-lucky kid, but now I think that seeking proprioceptive input is probably more likely. When standing for extended periods of time he will also find a table or chair on which he will just lightly place his hand, and when I kneel to speak with him (he is not even 4' tall), he will also kneel on both knees in high kneel, and a lot of times he sits with his legs in the "w" position, so I think a vestibular impairment is likely. So does the act of skipping or kneeling or “w” sitting so often actually mean he has an impaired proprioceptive or vestibular sense? He also has a fixation on "getting" food and will even leave pieces in his mouth to kind of chew on throughout the day. This behavior has been attributed to early experiences in the orphanage where other children often stole his meals. He is getting in trouble a lot because of the behavior, but could it be possible that food is somewhat of a comfort to him and he has this drive to seek out food sources because of a sensory impairment?

 David Brown, Educational Specialist, responds:

 You raise lots of interesting questions, none of which I can answer! BUT - here goes with a few of my immediate thoughts. First, as he is totally blind it is inevitable that this boy's other sensory systems will be somewhat challenged (as I said last Saturday), especially the tactile, proprioceptive, and vestibular senses. So he might not necessarily have specific deficits or impairments in these other senses (of course he might also have these, but from what you say it doesn't sound like it). It may just be that the lack of vision is making certain things quite difficult for him - things like getting and remaining upright, sitting on the floor unsupported (especially cross-legged), walking in a controlled and 'safe' way, and making the physical transitions between all these varying postures. If you take this view, then the specific behaviors that you mention could all be considered as adaptive functional behaviors, which I think is always a good idea to begin with before you jump to other interpretations.

What might help? Well first of all, if his language level is up to it, you could talk to him about these things to see what he himself is aware of in terms of the difficulties he has and the strategies that work for him. Again, as I said on Saturday, assessment and advice from a good Occupational Therapist would be great but might be hard to organize, and you would probably need to help the therapist with understanding issues associated with congenital blindness. If you know that the boy is about to be challenged by an activity that involves lots of walking, or standing, or floor sitting, maybe you can explore with him what kind of sensory inputs before the activity begins might help him to manage these things more easily? This is not so unusual since each of us will often use one activity to tone ourselves up ready for another activity that we know might be challenging. As preparation for the upcoming activity I would encourage him to try various things that might improve his senses of touch and body awareness and balance, even if this improvement is only temporary, such as:

--Swinging or rocking

--Deep pressure massage

--Holding hands for some mutual jumping on the spot

--Clapping the hands, maybe with arms extended above the head or straight out in front

--Stamping the feet

--Carrying something heavy as he walks.

If the boy can tell you that any of these activities improves things for him then that is great. You should also observe him closely to see if you can detect any improvement that might be the result of the new preparatory activity ("improvement" might mean things like less skipping, improved posture and walking gait, more stamina, better listening, improved fine motor control, or less 'w' sitting on the floor). If he prefers floor sitting in the kneel or the high kneel position rather than cross-legged or with the legs extended in front I would accept this, as long as kneeling does not then keep morphing into 'w'-sitting after a short while. I hope this gives you some ideas that will help.

As for the food issue. This might be associated with those bad memories of losing food to other children. It might be a comfort behavior. It might be that he finds chewing (strong proprioceptive input) helps to keep himself alert, or calm, or helps him to listen or to balance better, so he keeps food back to give him something to chew on. I really like to question and keep questioning everything, while also giving the student the benefit of the doubt that behaviors are functional adaptations rather than 'lazy', or 'naughty', or 'spoiled', or 'weird'.

Is there a standard list of objects used in communication systems for children who are deaf-blind?

Question: I work with a girl who is nine years old and is deaf-blind from birth.  I’ve always thought she is a lot more capable than people give her credit for.  She has 2 or 3 signs she uses and we started using objects with her and she has really caught on to using them.  I’m pretty sure she understands diaper, cup, backpack, and headphones (for music time).  I think she is ready for more objects because there seems to be so much “in there” that is trying to get out.  Is there some kind of list of the best objects to use with students like this?  I’ve looked on some of the websites and haven’t found anything like a dictionary for object communication.  Thank you and I will look for a response.

Maurice Belote, CDBS Project Coordinator responds:

Thanks for a great question.  This issue has come up over the years with other students so is a good one to address on a forum such as this.  First, let’s clarify what we mean by the use of objects as part of a communication system.  Objects are tactile representations of people, places, activities, etc.  They are sometimes called concrete objects of reference, meaning that they are real (and not abstract), and each object is meant to have special meaning to a specific child who is deaf-blind.  Objects are often used in calendar systems to help children make sense of their schedules, or they can be used outside of a calendar just to tell children what is going to happen next in their day.

Children who are deaf-blind typically communicate through multiple modes: behaviors, gestures, signs, speech, photos, picture symbols, objects, etc.  For many children who are deaf-blind, the expressive mode and the receptive modes may not be the same.  For example, a child who may understand signs quite well receptively may not actually use signed expressively, but may have more success expressively with object communication.

Now to answer the question you posed.  There isn’t a standardized list of objects used in communication systems for children who are deaf-blind, and this is for good reason.  Let me explain why I say this.  Every time we choose an object for a specific child, we have to consider that child’s experiences and choose objects that have meaning for that particular child at that point in time.  For example, an object that seems to be frequently used is a small piece of metal link-style chain to represent the swings on a play structure.  If the swings on the classroom’s playground are supported with chain, this might be a good object.  But suppose the swings in your playground are not chain, but rather steel cable with a hard plastic sheathing material.  A piece of that plastic-covered cable to represent swing would be meaningful to the child in your program because it is based on that child’s actual experiences.

Sometimes I tell people that when trying to choose new objects, it might be necessary to go do the activity with your eyes closed, in order to discover what tactile sensations the child might experience.  This will help you choose objects that are relevant to the child’s experiences.  For example, sit on the floor of the motor room and see what the carpet feels like.  Perhaps it is a distinctive style of carpet with an unusual feel and a piece of this carpet could be used to represent going to the motor room.  Or sit at the snack table and try to experience the snack table as the child does.  You might discover that the laminated plastic placement feels different from other things the child touches throughout the day and the placemat material could be used to communicate “snack time” to the child.

For more information about object communication systems, check out the Spring 2005 issue of the CDBS newsletter reSources and the article titled “Getting Started With Object Communication”.

http://www.cadbs.org/newsletter/

Another good source for information is the Project SALUTE website:

http://www.projectsalute.net/Learned/Learnedhtml/ObjectCue.html

There have been systems developed over the years that are standardized tactile communication systems.  For example, in the Standard Tactile Symbol System developed by staff of the Texas School for the Blind and Visually Impaired, the tangible symbol for cafeteria is a square of needlepoint backing material (vinyl grid) with an “X” made from two pieces of popsicle sticks.  This type of system is different from concrete objects of reference because it is much more abstract and requires the teaching of these symbols in order for the child to attach meaning to them.  For an example of symbols used in the Standard Tactile Symbol System, go to:

http://www.tsbvi.edu/Education/vmi/tactile_symbols.htm

I hope this has been helpful.  It may not be the answer you were hoping for, because the use of objects requires the careful selection of objects for each individual student so that objects make sense to students right from the start.  It will take a little more time to create individualized systems but the result will be objects that are instantly recognizable to children.  If a child doesn’t have to work hard to understand an object, she or he is much more likely to attach meaning to the object, and understand that you are using it because there is something important you want to communicate.

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What personality traits would one look for in an intervener so that the role they play is actually neutral, and does not morph into one of a parent, teacher or manager?

Question: What personality traits would one look for in an intervener so that the role they play is actually neutral, and does not morph into one of a parent, teacher or manager?

David Brown, CDBS Educational Specialist, responds:

ON WHAT TO LOOK FOR IN A POTENTIAL INTERVENER

In the field of deaf-blindness, we use the term intervener to describe the person who works on a one-on-one basis with a student. When asked what qualities I would look for in an Intervener to work with a particular student, I talked about the importance of personal qualities such as a positive attitude, flexibility and adaptability, good intuition and observational skills, the ability to report and record observations clearly and precisely, the ability to move quickly and decisively when necessary, and a good level of energy! In addition I would emphasize the ability to know when to intervene and when not to intervene as the student interacts with others at school, the desire and willingness to learn, and the confidence to do things in rather different ways from the usual if that seems to be necessary. As far as specific skills are concerned, such as knowledge of ASL, or managing a calendar system, or orientation and mobility techniques, these would be a big plus but they can also be learned quickly as necessary if the above personal qualities are already in place.

ON THE ROLE OF THE INTERVENER

I want to make a few specific points about the idea of an intervener for the student. The person I have in mind would work as a kind of facilitator fulfilling multiple functions as necessary. They would not be a sign language interpreter, though one of their functions might be to sign/fingerspell for the student as they tell her, literally, what others are saying if sign and fingerspelling becomes a regular feature of her communication and language program. They would also organize and utilize any concrete communication systems that feature in the student’s communication and language program, and organize any calendar system that might be agreed in the future. At other times they might simply paraphrase and condense into simplified English and manual signs what a teacher is saying so that the student gets enough of the ideas and information that she needs. Other possible functions could be to help the student with time-keeping, to direct her attention to people or places or events that she might otherwise not notice, to provide sighted-guide and physical support as appropriate while moving around the classroom and the school campus, to assist with the physical organization of materials, and to guarantee the student’s health and safety. The intervener’s role would be to accompany the student and be ‘in attendance’ ready to provide support when they (or the student) feel that it is necessary, not to be ‘doing for’ or ‘doing with’ her all the time throughout the day. Their role is to facilitate: independence, maximum access to information, the best and easiest social interactions, good physical organization, and physical safety.


Gloria Rodriguez-Gil, CDBS Educational Specialist, adds the following:

In order for the intervener to be neutral, the system has to support the intervener and the child who is deaf-blind. In part, the effectiveness of the intervener requires the recognition that the intervener’s roles and responsibilities—although similar— are not interchangeable with those of the parents, teachers or managers.

I have found that an intervener might move beyond designated roles and responsibilities when left alone with his or her student who is deaf-blind without adequate direction and support. To compensate for this lack of direction and support, an intervener may start making decisions that go beyond his or her purview.

In order for an intervener not to take on the role of parent, teacher, or manager, the intervener needs to be constantly supported by the rest of the student’s educational team. The intervener’s role needs to be defined and clear to all members of the team from the very beginning. In addition, there needs to be a multi-directional communication protocol between the other team members and the intervener.

An excellent resource for more information about interveners is the booklet “Interveners in the Classroom: Guidelines for Teams Working With Students Who Are Deafblind” that can be ordered through SKI-HI Institute at Utah State University.

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My friend’s child is deaf-blind. Their doctor is recommending a cochlear implant. Does CDBS have an official stance on the effectiveness of cochlear implants?

Question: My friend’s child is deaf-blind.  Their doctor is recommending a cochlear implant.  Does CDBS have an official stance on the effectiveness of cochlear implants?

Maurice Belote, CDBS Project Coordinator, responds:

CDBS does not have an official stance on the effectiveness of cochlear implants.  Every child who is deaf-blind—and has either been implanted or for whom implantation is being considered—is unique and there are complex, multiple factors that are weighed in determining the possible benefits of a cochlear implant.  The question of effectiveness has to be linked back to the issue of criteria for implantation, in that the criteria considered will assess the potential outcomes of receiving the implant.

The decision to implant ultimately rests with the family and the individual who is deaf-blind (if she or he is old enough to participate in the decision making process).  The family, in consultation with the child’s medical and educational teams, must decide if a cochlear implant—with the required medical appointments, surgery and longitudinal therapies—is likely to result in positive outcomes for the child.

The following excerpt is from an article by Kathleen Stremel and Peggy Malloy that appeared in the Winter 2006 issue of Deaf-Blind Perspectives.  It is an excellent overview of criteria and outcomes.  The entire article, titled “Cochlear Implants for Young Children Who Are Deaf-Blind”, can be found at:

http://www.tr.wou.edu/tr/dbp/jan2006.htm#cochlear

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Criteria for Implantation

One of the challenges for researchers and for centers that perform cochlear implantation is determining which children will benefit from a cochlear implant. They try to identify characteristics—candidacy criteria—that indicate that an implant may be successful and helpful for a particular child. Although there is very little information available about cochlear implants for children who are deaf-blind, over time, criteria have been identified for children who are only deaf or hard of hearing. Some criteria have been identified as being more important than others, but questions remain about why some cochlear implant users receive more benefit than others. Following are three basic questions that are considered when determining candidacy (ASHA, 2004):
 

- Is the physical implantation of the device possible and advisable given the medical status of the individual?
- Is it likely that the individual will receive more communication benefit from a cochlear implant than from a hearing aid?
- Do the necessary family, educational, and rehabilitation supports exist or can they be developed?


Implant center teams conduct extensive assessments in order to decide whether a child is a good candidate. In general, centers will include children with bilateral severe-to-profound sensorineural hearing loss; who are 12 months or older; who are failing to progress in speech, language, and auditory development; and who have a motivated family with appropriate expectations (Nussbaum, 2003).

The American Speech-Language-Hearing Association (ASHA) recommends that deaf children with additional disabilities be considered as candidates for implantation (ASHA, 2004). State deaf-blind projects report that eligibility criteria vary for different implant centers. Some centers are hesitant to implant children who are deaf-blind.

Outcomes of Implantation

Research about the effectiveness of cochlear implantation has been based primarily on children who are congenitally deaf without additional disabilities and has focused on spoken communication, particularly speech perception and production. As Patricia Spencer (2002b, p. 226) writes,

Cochlear implants provide many, but not all, deaf children with access to information that can help them develop understanding and production of spoken language. However, the range of benefits experienced is large and the factors that influence the benefits received by an individual child are still being investigated.

Overall, research shows that deaf children who have cochlear implants have significantly greater rates of growth in spoken language than deaf children who do not have implants. Specific findings include the following:

- Children implanted at younger ages (12–23 months) do better on auditory skill development than those at even slightly older ages (24–36 months) (Robbins, Koch, Osberger, Zimmerman-Phillips & Kishon-Rabin, 2004).
- Early implantation is associated with better speech production (Conner, Hieber, Arts, & Zwolan, 2000).
- Speech perception consistently improves with the length of time the child has been using the device (Tyler et al., 2000).
- A child’s preverbal communication, cognitive, and attending skills all play a critical role (Spencer, 2002b, p. 249), as does nonverbal intelligence (Geers, 2002).

References cited in this excerpt:

ASHA (2004). Technical report: Cochlear implants. American Speech Language-Hearing Association. Rockville, MD: American Speech-Language-Hearing Association. Retrieved December 15, 2005, from http://www.asha.org/

Connor, C. M., Hieber, S., Arts, H. A., & Zwolan, T. A. (2000). Speech, vocabulary, and the education of children using cochlear implants: Oral or total communication? Journal of Speech, Language, and Hearing Research, 43(5), 1185–1204.

Geers, A. E. (2002). Factors affecting the development of speech, language, and literacy in children with early cochlear implantation. Language, Speech, and Hearing Services in Schools, 33(3), 172–183.

Nussbaum, D. (2003). Cochlear implants: Navigating a forest of information . . . one tree at a time. Washington, DC: Gallaudet University, Laurent Clerc National Deaf Education Center. Retrieved December 15, 2005, from
http://clerccenter.gallaudet.edu/KidsWorldDeafNet/e-docs/CI/CI-G.pdf.

Robbins, A. M., Koch D. B., Osberger, M. J., Zimmerman-Phillips, S., & Kishon-Rabin, L. (2004). Effect of age at cochlear implantation on auditory skill development in infants and toddlers. Archives of Otolaryngology Head Neck Surgery, 130(5), 570–574.

Spencer, P. E. (2002a). Cochlear implant history and technology. In J. B. Christiansen & I. W. Leigh (Eds.), Cochlear implants in children: Ethics and choices (pp. 15–44). Washington, DC: Gallaudet University Press.

Spencer, P. E. (2002b). Language development of children with cochlear implants. In J. B. Christiansen & I. W. Leigh (Eds.), Cochlear implants in children: Ethics and choices (pp. 222–249). Washington, DC: Gallaudet University Press.

Tyler, R. S., Teagle, H. F. B., Kelsay, D. M. R., Gantz, B. J., Woodworth, G. G., & Parkinson, A. J. (2000). Speech perception by prelingually deaf children after six years of cochlear implant use: Effects of age at implantation. Annals of Otology, Rhinology, & Laryngology Supplement, 185, 82–84.

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I hope this information is helpful.  There is a federally funded research project that has looked at children who are deaf-blind and have either received implants or were considered for implantation.  The project, titled Cochlear Implants for Children with Combined Hearing and Vision Loss (Grant #327A050079) is expected to publish findings within the next 1-2 years and we will include a link to this information as it becomes available.

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I just learned that I will have an adolescent student on my speech therapy caseload who is both hearing and visually impaired. Are there specialized resources to use for articulation therapy for deaf-blind adolescents?

Question:  I just learned that I will have an adolescent student on my speech therapy caseload who is both hearing and visually impaired (and apparently falls under the deaf-blind category). The student has articulation goals in his/her IEP. Are there specialized resources to use for articulation therapy in such a case? If so, how do I access them? Or is there a workshop I could attend to help? (I presume use would be made of tactile cues and feedback. Is there instrumentation available to facilitate this?)

 Dr. Barbara Franklin, CDBS Principal Investigator, responds:

I am not aware of any references specific to articulation therapy for students with both a hearing and vision loss.  Any of the techniques recommended for individuals with a hearing loss can be modified to include tactile cues.  A good place to start are references included under Auditory-Verbal, specifically Estabrooks, Ling, and Flexler.  I might also recommend modifying the speech goals to be broader than individual sounds.  Since you mentioned the degraded intelligibility, you might look at more general goals such as improved rhythm and/or voice.  Since the adolescent is at the age where it is normal to reject speech therapy, a shift in focus might break down her resistance.

Here are 2 outstanding references for a start:

1. "Foundations of Spoken Language for Hearing Impaired Children" by Daniel Ling, 1989 edition.
2. "Auditory-Verbal Therapy" by Warren Estabrooks.  He has written many books on this topic.

I am sure that these books are in the library.  They are rather expensive to purchase unless you have a budget at your school.

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