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with Lynne McAlister and Sara Kitchen, Certified Teachers of the Visually Impaired.

Lynne: Hi, I'm Lynne McAlister.

Sara: And I'm Sara Kitchen.  And today, we're gonna talk about cortical visual impairment.  Give you an introduction to it, what's it all about, because not everybody is familiar with it.  And so we wanted to just kind of give you a starting point.

Lynne: So, this is CVI 101.

Sara: Yes.

Lynne: And I'm gonna start with the definition of cortical visual impairment. This is diagnosed to recognize when there's an obvious visual impairment that's unexplained by any damaged to the eye itself.  Usually, it's coupled with red flags, and we're gonna get into those a little later.  CVI is a relatively new area of research.  It wasn't until the mid-'80s that it was even considered a visual impairment.  Before that, it was just kind of lumped in to the MR brain damaged group.  It's the fastest growing visual impairment in developed countries.  This is probably because with our kind of Western medicine, we're able to keep people alive after serious injury that in the past would not have survived.

Sara: Uh-hmm. And preemies.

Lynne: Yes.  So, since CVI is, um, you know...since visual impairments are diagnosed by an eye doctor, some doctors maybe reluctant to diagnose a visual impairment when there is no obvious damaged to the eye that is visible to the eye doctor.  And so we have found that CVI maybe underreported.  You may have a student that has really obvious characteristics of CVI and functions as an individual with a cortical visual impairment.  Yet on the eye report, the diagnosis is just something totally off.  I think we have a student with a muscle imbalance, I think.  It's the reason for her visual impairment on the eye report.

Sara: And it really does makes sense that the doctor wouldn't feel comfortable with diagnosing that because their training is in the eyeball and it's not in the brain.  That's a different area. . .

Lynne: Right.

Sara: ...completely. So...

Lynne: So, you can't rely on the eye report to know if you are working with a student with CVI.  Well, tests such as MRIs, you know, can be somewhat useful and that you can see the areas at the brain that are damaged.  They're not gonna give you a lot of information about what the student's vision is like.  Even the same part of the brain damaged in two different individuals could give you two wildly different visual characteristics.  So, when you are working with the individual that has characteristics of cortical visual impairment, the first thing you're gonna wanna do is go back and look at the medical history of the student.  And what we're gonna be looking for is really obvious red flags.  Asphyxia is a big red flag, that's a lack of oxygen at any point during birth, prebirth, really anything that would restrict air to the brain, strokes...

Sara: Uh-hmm.

Lynne: ...drowning...

Sara: And when the blood flow is restricted, that's another thing.

Lynne: Uh-hmm.

Sara: Mainly, all of these things have to do with blood flow or oxygen to the brain.

Lynne: Right.

Sara: And also, any head trauma could cause CVI.

Lynne: Right.

Sara: Or an infection, an infection that causes swelling will restrict the blood flow.

Lynne: Right. Cytomegalovirus, I think, is a big one.

Sara: Uh-hmm.

Lynne: And any kind of trauma, like Sara said, gun shot wound, car accident, bike accident and things like that.  So, when you have...so now, if you have a student with some of these characteristics, and then you have the red flag in the medical background, that's a really good indication that you should start looking at CVI.  And thinking about trying to figure out now what exactly this student can see.  So, here's a picture of the brain I'd like to use.  It shows how visual information comes in through the eye.  It travels down the optic nerve to the back of the brain.  And then, it is diverted into two streams.  The ventral stream goes to the temporal lobe there toward the bottom of the brain.  And this is where visual object perception and recognition takes place.  So, this is where you recognize your mother.  The other stream travels up toward the top of the brain to the parietal lobe. And this area of your brain allows your body to act upon what you're seeing.  And so, this is the part of the brain that allows you to give your mother a kiss.

Sara: Oh.

Lynne: So, anytime there's damage to any of this whole system or any part of the brain in between these systems, so they can't communicate with each other, there is, you know, a chance that your vision will not function correctly.  You know, we're gonna talk more about specific characteristics of CVI.  But one of them is, you know, the inability in a lot of kids to look at something and act upon it at the same time.  And so, that might be explained, you know, through this picture that those two areas of the brain aren't communicating with each other.  Okay. I found it really interesting when I did my research on CVI to kind of wrap my brain around the notion that, um, we...humans perceive vision as an external events, so that we tend to think, um, things are out there, and I'm looking at them because they're out there.

When actually, nothing is out there.  Your brain is using chemical processes to make a form of picture based on information that's coming into it. And so, vision actually is an internal event.  And so when we think about it that way and when we think about students, people with CVI, they're seeing everything that you and I are seeing. But, you know, with the lack of any other damage to the eye itself, all the information is going in to their brain.  They can see everything.  They're just not making that picture.  Their brain is not putting it together.  And that is the cause of the visual impairment.  Not that they can’t see.

Sara: Right. And that is the same with the other senses as well.  I mean, all of our senses happen inside of our heads and we only know the things we know about...We know where things are in space from previous experiences and integrating our senses.  And that's really something to think about, too, when you're thinking about kids with CVI because it's not...Sometimes it's not just the vision that isn't integrated, sometimes it's the whole slew of things that are not integrated, so...Not only that they have to integrate-their vision’s, not working so well with their other senses, but they may have to, you know, their other senses might a little scrambled as well.

Lynne: Right.  So, the old theory was that your brain was hard-wired.  And certain parts of your brain have certain function.  And if there's damage to any of those parts, then you lost that function forever.  You would never get it back.  However, recent research shows really clearly that the brain is not hard-wired at all.  There's a lot of, lot of research out there now about brain plasticity and how plastic your brain is.  Different parts of your brain take over really easily for other parts that used to do, you know, used to have a function.  In my research, I've read an article about an experiment where they did PET scans on people who just recently lost their vision and were learning Braille.  And it was almost instantaneous that these people's occipital lobe, that traditionally processes visual input was processing the tactile input when they were reading Braille.

Sara: Oh, that's neat.

Lynne; Yes. And they said the speed that which that part of the brain took over the tactile processing was so fast, that it was just like it was wired to do that.

Sara: Wow! That's cool.

Lynne: Yeah, it was really interesting.

There is a little video that we found on PBS.

Is that where it is?  Called Wired Science.  Based on the experience of Paul Bach-y-Rita back in the '80s, which is kind of goes on this very topic.  We're not gonna take time right now to show it to you, but...

Sara: But you can click on the link in your notes and you can look at that video.

Lynne: Right. It's very, very interesting.  And it goes along with this whole subject.

Sara: One of things, though, in that video that I don't want anybody to misled by is that there is, um, there is...  All of the examples given are for people who have previously had vision, I think.  And they had some visual knowledge, so it's...  We're not advocating that you put electrodes in your students' mouths.  Mostly, what we really want you to know and if you watch the video, you'll know what I'm talking about.  What we really wanted to emphasize is that the brain is plastic.  And that's what this video does.  Even though it does deal with some visual rewiring.  So, I just want you to really quickly look at this drawing.  And it was done by an eight-year-old who has cortical visual impairment.  And what's really interesting in this drawing is that the eyes and the hair are on the bottom and the mouth is on the top.  Can you see those two circles, kind of half circles on the side?

Those are the ears.  This child has drawn a face, but it's upside down.

It was right-side up to the child...  This is how the child drew it.  And the child described it and said that the eyes and the hair were down here. And so, this is the way a child who has CVI and can communicate through drawing and, you know, describing it, sees.  So, it's just really interesting because things can be really scrambled and, you know, their perception will be really different.

Toolbox Editor's Note: A deafblind intervener is a new class of paraprofessional. Professional standards and practices are now emerging. Below is a suggested job description which was developed at a meeting which included administrators, parents, paraprofessionals and VI professionals. For more information about interveners, contact a member of the Deafblind Outreach Team at TSBVI. Contact information is included on the VI Consultants List in the Resources Section.

Suggested Job Description

Position: Intervener for Student with Deafblindness

An intervener is a staff position designated to provide direct support to a student with deafblindness for all or part of the instructional day as determined by the student's Individual Educational Plan (IEP). The decision to designate an intervener is based on the level of support needed by a student to participate effectively in his/her instructional environment(s) as described by the IEP. The intervener works cooperatively with parents and a variety of direct service providers and consultants including: classroom teachers; teachers of children with hearing impairments, visual impairments, or severe disabilities; speech therapists; occupational and physical therapists; orientation and mobility instructors; and other professionals as well as paraprofessionals.

Rationale: A child who is deafblind needs to have the opportunity to develop a personal relationship with a person who will consistently be available to interpret the world for the child. The child must have continual access to a person who communicates effectively so that the individual can develop a sense of trust and security that will enable the child to learn. Many students with deafblindness require extensive and novel modifications to an existing educational model. The services of an intervener can be used to individualize the process. An intervener serves as a bridge to the world for a child who has deafblindness.

Qualifications: Experience with and/or desire to work with students with sensory impairments. Must be willing to participate in ongoing training in the area of deafblindness.

Reports to: Appropriate administrative staff

Supervises: None

Responsibilities: The intervener assists a student with deafblindness to actively participate in activities and provides a supportive and effective environment in which the student can learn. The intervener provides this service within the guidelines of the school, as set forth in its policies and procedures. The intervener works under the direction and supervision of the classroom teacher, and participates as a full educational team member in developing and implementing the student's IEP.

Specific Duties Include: The Intervener's specific duties will be individualized according to the needs of the child and the profile of the current educational placement. Typically, duties may include:

  • Has the primary responsibility to provide direct support to a student with deafblindness during all or part of a school day as part of an educational team, and as indicated in the student's IEP
  • Follows the student's IEP and the modifications and instructional techniques recommended by related service staff
  • Become proficient in students' individual communication methods and strategies
  • Creates instructional materials as needed
  • Accompanies and supports the student during community-based instruction
  • Visits or provides instruction in the student's home as deemed appropriate by the IEP committee
  • Maintains communication between home and school, and keeps a daily log of information about the student and his or her activities
  • Participates in IEP meetings and student staffings
  • Participates in the assessment of the student and in the preparation of IEPs, progress reports, behavior plans, data collection, and other documentation for program monitoring
  • Participates in site-based, regional, and statewide training in the area of deafblindness
  • Works to attain proficiency in all items listed on the "Primary Competencies for Interveners" self-assessment
  • Serves as a resource to other staff on issues related to deafblindness.

Work Attitudes:

  • Feels comfortable working in close physical proximity to students while frequently using touch to communicate with and instruct students who are primarily tactile learners
  • Demonstrates emotional maturity, stability, ability to perform under stress, and frustration tolerance
  • Shows ability to exercise good judgment, cooperation, tact, and discretion in dealing with the student, family, and others
  • Shows interest in developing additional knowledge and skills
  • Follows team decisions, established policies and procedures, and designated lines of communication and authority.

Texas Deafblind Outreach is actively involved in the development of materials specifically addressing issues about deafblindness for families and professionals.  Among the many materials available through Texas School for the Blind & Visually Impaired Curriculum Department of special interest to staff serving individuals with deafblindness are these items.

Available from TSBVI Curriculum 

Documents and Articles (English)

Causes of Deafblindness

Syndromes/Conditions Associated with Deafblindness

Minimal Losses...Major Implications

Administrators

IEP Quality Indicators for Student with Deafblindness

Interveners for Students with Deafblindness in Texas

New to Deafblindness? Five Tips for Administrators

Assessment

Assessment of Biobehavioral States and Analysis of Related Influences

Assessment of Deafblind Access to Manual Language  Systems  (ADAMLS)

Assessment Resources for Vision and Hearing

Bringing It All Back Home: Family-Driven Assessment and Intervention for Children Who Are Deafblind

Home Talk: A Family Assessment of Children Who Are Deafblind

The van Dijk Approach to Child-Guided Assessment

Behavioral Challenges

Looking at Self-Stimulation in the Pursuit of Leisure or I'm Okay, You Have a Mannerism

Calendars, Routines and Interactions

Let Me Check My Calendar

Make it Routine

Supporting High Quality Interactions with Students who are Deafblind: Part 1 A Summary of Current Research

Supporting High Quality Interactions with Students who are Deafblind: Part 2 Research to Practice

Communication and Language

A Standard Tactile Symbol System- Graphic Language for Individuals who are Blind and Unable to Learn Braille

Learning to Communicate

What A Concept!

Expanded Core Curriculum Areas

Braille/Print Literacy Issues and the Learning Media Assessment

Orientation and Mobility Training for Students Who Are Deafblind: Going Beyond the Blue Book

Sexual Health Care -- Excerpts from Introduction to Sexuality Education for Individuals Who Are Deaf-Blind and Significantly Developmentally Delayed

Strategies for Minimizing the Risk of Sexual Abuse

Toilet Training Children with Deafblindness- Issues and Strategies

What's Your Pleasure? Teaching Leisure Skills

Identification of Deafblindness

A Process for Identifying Students Who May Be At-Risk for Deafblindness

Early Identification of Hearing and Vision Loss is Critical to a Child's Development

How Well Can Your Child with Hearing Loss See?

Instructional Strategies

Education Protocol for Cornelia de Lange Syndrome

The Importance of Auditory Training for Children Who are Deafblind

Interveners

Intervener Competency Resources Matrix (.doc 272k)

Interveners for Students with Deafblindness in Texas

Intervener Portfolio Summary 

Portfolios for Interveners

For Families

A Trip to the Doctor Turns GOOD!Driving with Usher Syndrome

Planning and Supporting a More Active Life at Home

Parenting a Child with Deafblindness

Preparing Your Daughter for Her Menstrual Cycle

Brothers and Sisters: Strategies for Supporting Siblings Of Children who are Deaf Blind

Transition to Adult Life

Deaf-Blind Multiple Disabilities Medicaid Waiver Update

Transition To A Medicaid Waiver Program For Individuals Who Are Deafblind With Multiple Disabilities

Twelve Things You Can Do to Plan for Your Child's Future Today

I Love my Life, Swimming, and Texas Longhorns!

My First Scuba Diving Lesson

"Tuff" Love or Raising Laurie

When Planning for Adult Life, How is a "Life-style" Different than a "Program"?

 

Documents and Articles (EspanÕl)

Indicadores de Calidad del IEP para Estudiantes con Sordoceguera

Interventores para Alumnos con Sordoceguera en Texas

 ¿Qué tan bien puede ver un niño con pérdida de audición?

¿Qué tan bien puede ver un niño con pérdida de audición?

Protocolo de educación para niños que padecen del síndrome Cornelia de Lange

  • National DeafBlind Child Count, NCDB"The term, 'children with deafblindness,' means children and youth having auditory and visual impairments, the combination of which creates such severe communication and other developmental and learning needs that they cannot be appropriately educated without special education and related services, beyond those that would be provided solely for children with hearing impairments, visual impairments, or severe disabilities to address their educational needs due to these concurrent disabilities."  
  • This is the definition and the ways that a student may meet IDEA eligibility as DeafBlind in Texas. Texas Education Agency, TEA, Chapter 89, Subchapter AA:

(2) Deaf-blindness. A student with deaf-blindness is one who has been determined to meet the criteria for deaf-blindness as stated in 34 CFR, §300.7(c)(2). In meeting the criteria stated in 34 CFR, §300.7(c)(2), a student with deaf-blindness is one who, based on the evaluations specified in subsections (c)(3) and (c)(12) of this section:



(A) meets the eligibility criteria for auditory impairment specified in subsection (c)(3) of this section and visual impairment specified in subsection (c)(12) of this section;



(B) meets the eligibility criteria for a student with a visual impairment and has a suspected hearing loss that cannot be demonstrated conclusively, but a speech/language therapist, a certified speech and language therapist, or a licensed speech language pathologist indicates there is no speech at an age when speech would normally be expected;



(C) has documented hearing and visual losses that, if considered individually, may not meet the requirements for auditory impairment or visual impairment, but the combination of such losses adversely affects the student's educational performance; or



(D) has a documented medical diagnosis of a progressive medical condition that will result in concomitant hearing and visual losses that, without special education intervention, will adversely affect the student's educational performance.

Meeting eligibility in one of these ways requires both hearing and vision professionals at least attend ARD meetings.

The majority of students reported on the Deafblind Census will fall into one of the 4 categories above.

Examples of (A) could include

  • a child with Usher Syndrome 1, where the hearing loss is well documented and the vision loss has resulted in visual field loss.
  • a child with hearing loss and vision result of prenatal exposure to CMV as the cause of both hearing and vision loss.

An example of (B) could include students with suspected hearing loss and the team needs one year to confirm or deny the presence of the hearing loss. It was not intended that these students maintain this form of eligibility for longer than one year. 

A examples of (C) could include the student with Down Syndrome who has high myopia and a mild fluctuating conductive hearing loss.  Alone, these losses may not impact education.  However, given the presence of Down Syndrome together with these mild losses, the educational impact of the combined losses may be greater than anticipated.  This could be confirmed by a functional vision and functional hearing assessment.

A example of (D) would include students with Usher type 2 where the hearing loss is present from birth but the vision loss is slow to develop.  These students may not show any vision loss until very late in their high school years but there may be value working on a transition plan for them.  There may be value in connecting the to other students and families with Usher type 2.

There may be students who could be placed on the Deafblind Census that an ARD committee has decided do not meet the above criteria.  These could include:

  • A student in general education who does not need special education and yet has a combined hearing and vision loss (including progressive losses).  An example would include a student with Usher type 2 for whom the hearing loss is not creating educational need and the vision loss has not progressed to the point of educational need either.  A student like this may or may not be receiving 504 services.
  • A student who meets eligibility but the ARD committee has decided to not consider one or another of the sensory categories, usually for social/emotional reasons.  An example of this would be the student with Usher type 1 who has grown up profoundly deaf, uses visual communication and is considered too emotionally fragile at this time to receive the additional label of visually impaired.
  • Students suspected of being deafblind but more assessment is needed.  These students can remain on the census for year as assessment data is being collected. Assessment could include functional vision and functional hearing testing in the absence of good eye medical or audiological information.  This might include the student who is so medically fragile that trips outside the home to get this kind of medical information are not easily possible.

Developed by Texas Deafblind Outreach, TSBVI Outreach Programs                

Updated December 2016

 You may download a prin version of this document in Word or PDF.

An intervener is a paraprofessional who provides direct support to a student with deafblindness for all or part of the instructional day.  The intervener receives training in communication methods and sensory accommodations that are needed for an individual student with deafblindness to access information in various learning environments.  The intervener supports the existing service delivery model, collaborating with the student’s team in implementing the student’s IEP.

Most students with deafblindness need to develop a bond and a trusting relationship with a consistent communication partner in a predictable environment in order to progress to higher-level learning. For many students who are deafblind, this trusted communication partner is the intervener. 

Teaming is essential in the success of this model. Classroom teachers and other professionals on the instructional team provide the supervision, direction, and support that are necessary for interveners to be effective in their role.  An intervener should never carry out his/her duties independently, but instead function as an integral part of the student’s instructional team.    

Primary roles of the intervener

In summary, the primary role of the intervener is to:

  • facilitate the access of environmental information usually gained through vision and hearing, but which is unavailable or incomplete to the individual who is deafblind;
  • facilitate the development and/or use of receptive and expressive communication skills by the individual who is deafblind; and
  • develop and maintain a trusting, interactive relationship that can promote social and emotional well-being.  (Alsop, 2002)

More information on the roles and responsibilities of the intervener, teacher, and administrator using this model of instruction can be found in the booklet Interveners in the Classroom:  Guidelines for Teams Working with Students Who Are Deafblind.  (Alsop, et al, 2007)

Is an intervener needed for your student?

This document is designed to help the IEP team to determine whether an intervener is an appropriate support for an individual student with deafblindness in a school setting.  It is a guideline for discussion about all supports needed to provide the student full access to the educational experience based on: 1) individual student assessment; and 2) consideration of the existing and/or proposed services for the student. 

Step 1: Complete, Update, and Review Assessment

In order to use this form effectively, student assessment in critical areas must have been completed or updated to reflect the impact of deafblindness on instruction.  Critical areas may include, but are not limited to:

  • vision and hearing, including the degree and complexity of sensory losses:
  • orientation and mobility;
  • communication:
  • concept development:
  • self-help and daily living skills:
  • adaptive technology;
  • behavior;
  • and social/emotional needs.

The questions asked in the next steps of this document will clarify issues to focus upon when reviewing or completing assessments, so that appropriate issues related to deafblindness are fully considered and addressed.  The deafblind-specific accommodations needed to appropriately support the student’s full access to instruction will be suggested by these questions, and will be helpful in guiding current and future assessment.

If you would like additional understanding of the issues that lead to meaningful assessments for students with deafblindness, you might also find the following documents helpful:

  • Documenting Instructional Considerations for the Student with Deaf-Blindness by Robbie Blaha, Education Specialist and Kate Moss, Education Specialist, Texas Deafblind Outreach
  • IEP Quality Indicators for Students with Deafblindness developed by Texas Deafblind Outreach
  • 10 Issues to Always Consider When Intervening for Students with Deafblindness by David Wiley, Texas Deafblind Outreach
  • A Process for Identifying Students Who May Be At-Risk for Deafblindness by Robbie Blaha, et al, Texas Deablind Outreach
  • Assessment of Deafblind Access to Manual Language Systems (ADAMLS) by Robbie Blaha & Brad Carlson (2007).  From DB-LINK:  https://nationaldb.org/library/page/88
Have all critical student assessments been completed, updated when needed, and reviewed in light of the issues raised throughout this document and other literature about deafblindness?
  Yes ­– Use assessment information when answering the questions found in this document.
  No – Complete, update, and/or review assessments before making decisions about an intervener.  Use the questions in Steps 2 & 3 steps to help guide assessments.

 

Step 2: Questions about the Student with Deafblindness

The decision by the IEP team to provide intervener services is based on the level of support a student who is deafblind needs in order to gain access and effectively participate in all of his/her instructional environments.  The team should discuss how to address all identified issues. 

A variety of support approaches and strategies may be creatively employed by the team to address the student’s individual needs.  In some cases an intervener trained in deafblind-specific knowledge and skills may be the most appropriate, effective, and/or efficient service delivery model.

The questions in the following table can assist the team in determining how to address the supports related to the student’s deafblindness.

Questions about the Student with Deafblindness

1. Does the student need assistance to effectively detect, gather, and/or prioritize information from communication partners and the surrounding environment?

 
Yes No
   

            If yes, how will this access issue be addressed, and by whom?

 

2. Does the student rely on the sense of touch or near vision to gain information, so that he/she is unable to reliably get information that other students get from a distance?

Yes No
   

            If yes, how will this need be addressed, and by whom?

 

3. In a group instructional setting, is it difficult for the student to gather information or follow a discussion?

Yes No
   

            If yes, how will this need be addressed, and by whom?

 

4. Does the student use equipment or adaptive aids, but not efficiently or effectively enough to keep up with the pace of the instruction being given?

Yes No
   

            If yes, how will this need be addressed?

 

5. Is the student unable to orient him/herself to the environment or move to different learning environments without assistance?

Yes No
   

            If yes, how will this need be addressed?

 

6. Does the student rely on communication methods not generally used or understood by many of his or her communication partners (teachers, staff, or peers)? Consider all the various environments the student accesses throughout the entire school day.

Yes No
   

            If yes, how will this need be addressed?

 

7. Does the student often need individual intervention by a trained or knowledgeable support person in order to communicate effectively receptively and/or expressively?

Yes No
   

            If yes, how will this need be addressed?

 

8. Does the student need a high degree of consistency in strategies and communication systems, so that working with numerous people during the day causes him/her confusion and frustration?

Yes No
   

            If yes, how will this need be addressed?

 

9. Due to sensory isolation, does the student have difficulties in trusting, bonding, or relating and responding to a variety of people?

Yes No
   

            If yes, how will this need be addressed?

 

10. Because of sensory impairments, is the student unfamiliar with certain common information, so that in order to fully understand concepts or common references used in instruction or conversation, the student frequently needs more explanation than that given to other students.

Yes No
   

            If yes, how will this need be addressed?

 

11. Is the student unable to access the same information as classmates who are not deafblind?

Yes No
   

            If yes, how will this need be addressed?

 

 

Step 3: Questions about the Instructional Team

Answering the questions in the next table will help the ARD committee decide if the support described above can be provided in the proposed or current instructional arrangement without additional supports.

Questions about the Instructional Team Yes No

1. Does the student’s need for effective deafblind-specific intervention strategies and communication methods require additional education and training for staff members?

   
  • If numerous staff will need training, would it be more efficient to concentrate training on fewer specialized individuals?
   

2. Does the specialized educational programming recommended through assessment and the IEP create a need for an additional trained support person?  Before answering this question, examples to consider include, but are not limited to:

  • due to other demands in the classroom, does the instructor find it difficult to remain in close enough proximity so the student can maintain visual, auditory, and or tactile access to instruction;
  • due to the needs of other students, does the instructor find it challenging to adjust the pace of instruction so the deafblind student has enough time to get understandable information through either modified communication or tactile/close-vision exploration;
  • do any instructors have difficulty or unfamiliarity with the student’s preferred communication modes (e.g. tactile symbols, sign language, tactile sign);
  • does existing staff find it challenging to schedule time for deafblind-specific material adaptation and equipment maintenance (e.g., communication aids, vision devices, hearing devices, etc.) ;
  • Other (explain). ______________________________________________
 
   
   
   
   
   

3. Is it challenging to limit the number of individuals working with the student so that he/she can form trusting relationships?

   

4. Is it challenging for the team to be consistent due to the large number of individuals working with the student?

   

5. Is it challenging for the team to provide necessary background and fill-in information to help the student fully understand instruction and conversation across all settings?

   

 

Step 4: Determine the Need for an Intervener

Now that you have completed the Steps 1-3, you are ready to use that information to discuss and make a recommendation about the need for an intervener for the student with deafblindness.  Any items answered “yes” in steps 2 and 3 should result in discussion and planning.

Is an Intervener Needed? Yes No
Is a paraprofessional with specific knowledge and skills in deafblindness needed for all or part of the educational day to ensure that the student can access information and effectively participate in all of his/her instructional environments to complete IEP objectives?     

 

Additional Information

If an intervener is recommended, this should be noted in the Supplemental Aids and Services section of the IEP.

IEP Quality Indicators for Students with Deafblindness is another tool designed to help educational teams develop appropriate IEPs for students with deafblindness.  Completing that document can also provide input for the intervener question.

References

Alsop, L., Blaha, R., & Kloos, E.  (2002).  The intervener in early intervention and educational sttings for children and youth with deafblindness (Briefing Paper).  Monmouth, OR:  NTAC, The National Technical Assistance Consortium for Children and Young Adults Who Are Deaf-Blind.

Alsop, L., et al (2012).  A Family’s Guide to Interveners for Children with Combined Vision and Hearing Loss.  Logan, UT:  SKI-HI Institute.

Alsop, L., et al (2007).  Interveners in the classroom:  guidelines for teams working with students who are deafblind.  Logan, UT:  SKI-HI Institute.

Texas Deaflind Outreach. (2009).  IEP Quality Indicators for Students with Deafblindness. Austin, TX:  Texas Deafblind Project at Texas School for the Blind and Visually Impaired.

Texas Deaflind Outreach. (2000).  Interveners for students with deafblindness in Texas.  Austin, TX:  Texas Deafblind Project at Texas School for the Blind and Visually Impaired.

Additional Resources on Interveners

For more information on the topic of the Intervener Team Model, visit:

National Consortium on Deaf-Blindness (NCDB): nationaldb.org/library/list/74

NCDB Intervener Initiative: https://nationaldb.org/groups/page/9/national-intervener-services-initiative

SKI-HI Institute, Utah State University: intervener.org

Download form in RTF (75k)

Direct Service
CATEGORYLOW NEEDS - 1AVERAGE NEEDS - 3HIGH NEEDS - 5SCORE
VISION
  • No "severe vision loss" noted on eye report, but ability to attend to visual stimuli is questionable
  • Uses vision very well in a variety of settings
  • Very sure of functional vision
  • Visual diagnosis made over 1 year ago
  • Vision is not expected to change in the next 6 months
  • Able to attend to visual stimuli
  • New visual skills being developed
  • Visual diagnosis made 1 year ago
  • Unsure of functional vision
  • Difficulty attending to visual stimuli
  • Vision fluctuates
  • Severe vision loss or totally blind
  • Prognosis for improved visual functioning appears to be good (CVI, ROP)
  • Progressive loss of vision expected in next 6 months
  • Visual diagnosis made less than 1 year ago
DIRECT SCORE
HEALTH
  • Very Medically Fragile
  • No health concerns
  • Some health concerns (nutrition, etc.)
  • Chronic ear infections
  • Very premature/low birth weight
  • Significant time spent in hospital
DIRECT SCORE
OTHER IMPAIRMENTS
  • No additional impairment
  • Additional impairment
Two or more additional impairments DIRECT SCORE
DEVELOPMENTAL
  • No developmental delays
  • Very slight developmental delays
  • Vision loss may be contributing to developmental delays
  • Modifications needed
DIRECT SCORE
FAMILY MEMBERS/PRIMARY CAREGIVER
  • Does not want additional professionals making weekly home visits
  • Understands about their child's vision
  • Distressed about issues other than this child (Financial, Marital, etc.)
  • Does not readily participate in parent child trng.
  • Needs help learning about the educational systems
  • Want additional resource info
  • Need information about getting the most out of ophthalmological appointments and interpreting reports
  • Has lots of vision related concerns
  • Needs lots of info about their child's vision
  • Needs additional support
  • Grief issues about vision
  • Needs help bonding with child
  • Needs help reading child's communicative cues
DIRECT SCORE

 

Consulting Service
CATEGORYLOW NEEDS - 1AVERAGE NEEDS - 3HIGH NEEDS - 5SCORE
PROFESSIONALS ON TEAM
  • All have experience working with babies with similar vision
  • No questions about ECI or ISD procedures
  • Few questions about ECI or ISD procedures
  • Few questions about assessment, stategies, etc.
  • Have no experience working with child with visual impairment
  • Need training in implications, modifications, strategies, communicative cues, etc. for child with VI
CONSULT SCORE
VI TEACHER (Activities in Support of Instruction)
  • Has significant experience working with babies, babies with visual impairments, and babies with multiple impairments
  • Has moderate experience working with babies, babies with visual impairments, and babies with multiple impairments
  • Has little or no experience with babies
  • Needs time to learn from other professionals on team (Motor, Handling, Communication, Infant Development, Working with Families, etc.)
  • Suspected or diagnosed auditory impairment
ACTIVITIES IN SUPPORT OF INSTRUCTION SCORE
OTHER    
  • Child actively explores environment
  • Needs adaptations to learn basic concepts
  • Needs help to generalize skills
  • Needs more exposure to concrete experiences to develop language skills
  • Body imaging, spatial awareness
DIRECT OR CONSULT SCORE
*PROFESSIONAL JUDGEMENT FACTORS (POSITIVE OR NEGATIVE)       DIRECT OR CONSULT SCORE
TOTAL SCORES DIRECT SCORE CONSULTING SCORE ACTIVITIES IN SUPPORT OF INSTRUCTION SCORE  

*PROFESSIONAL JUDGEMENT FACTORS:

(THESE CAN BE POSITIVE OR NEGATIVE)

SCORE FACTORS BRIEF DESCRIPTION
  Age of Student  
  Transition Issues  
  Parent Concern/Issues  
  Attendance  
  Home Environment  
  VI Teacher Issues  
  Other Professional's Issues  
  Child Issues  
  Other  
  TOTAL  

 

DIRECT SCORE FREQUENCY AND AMOUNT: DIRECT SERVICES CONSULTING SCORE FREQUENCY AND AMOUNT: CONSULTING SERVICES ESTIMATED TIME FOR ACTIVITIES IN SUPPORT OF INSTUCTION
1-5 2 HOURS PER MONTH 1-2 2 HOURS PER MONTH PLANNING
6-20 1 HOUR PER WEEK OR 2 30 MIN. SESSIONS/WEEK 3-4 1 HOUR PER WEEK PREP
21-25 2 HOURS PER WEEK 5-9 2 HOURS PER WEEK LIAISON
26-30 3 HOURS PER WEEK 10+ 3 HOURS PER WEEK EVALUATIONS
30+ 3+ HOURS PER WEEK     IFSP
        MEETINGS
        OTHER

____ DIRECT SERVICE TIME

____ CONSULTING TIME

____ TRAVEL TIME

____ ACTIVITIES IN SUPPORT OF INSTRUCTION

____ TOTAL NUMBER OF HOURS

Teacher of the Visually Impaired

NOTE: To be used with: "GUIDELINES FOR AMOUNT OF SERVICE TO STUDENTS WITH VISUAL IMPAIRMENTS: SAMPLE" (Developed by the VI staff of Denton ISD, Revised by D. Leff and O.F. Morris), Found on pages B-57-58 of the Quality Programs For Students With Visual Impairments Manual

Adapted by Stacy Shafer from:

Michigan's Vision Severity Rating Scale
1996
Printed by the Office of Special Education Services, Michigan Department of Education 

 

Through observation and listening to stories from others, list on a sheet of paper the things your deafblind student likes and doesn’t like.  We all enjoy things that we are good at and that we understand.  The student’s “Likes” will be areas of strength and indicate sensory channels that are working.  “Dislikes” will be areas of weakness and indicate sensory channels that may not be working efficiently.  The information you gather will suggest underlying themes that can be used for modifications, teaching strategies, topics of communication, and activities.

Absolutely Awesome Application!

I made a list of Joe Bob’s likes and dislikes, and discovered that he really likes touching and holding things that are cold.  I developed a work routine for him in the cafeteria.  (He’s 18 and I wanted to find jobs he could do around the school.)  His job is to get a specific number of white, chocolate and strawberry milks from the walk-in refrigerator and put them in the cooler at the front end of the cafeteria line.  Joe Bob really enjoys the job and it gives him opportunities to practice other skills like exercising range of motion with his arms, grasping and releasing, 1:1 correspondence, matching by color, and using his communication board to have conversations with the other cafeteria workers.  The one problem he has is moving through the kitchen in his electric wheelchair.  It’s a pretty tight space, but the cafeteria supervisor has offered to rearrange some of the tables, so we’ll see if that helps. 

Instructions

  • Study the idea
  • Think of a way to use the idea with your student
  • Describe how you applied the idea; what it looked like, what worked well, what was a problem, etc.
  • Keep the original and send a copy by mail to: 
    Deafblind Outreach
    TSBVI
    1100 West 45th St.
    Austin, TX 78756
    or by fax to:  (512) 206-9320

Here are some additional resources about this idea:

See Videos explaining The Tactile Symbols Directory

Click here to view and/or download an updated Tactile Symbol Directory that includes items not available online.

Meaning Category

For additional information please contact TSBVI's Speech Language Pathology Department at .


Meaning Category: TIME (Background Shape: Pentagon)

Days of the week

Background Texture: Netting

Day of the WeekSymbolPicture
Monday brad Monday.jpg
Tuesday fat rubber band Tuesday.jpg
Wednesday button Wednesday.jpg
Thursday lego Thursday.jpg
Friday horizontal popsicle stick Friday.jpg
Saturday horizontal pipe cleaner Saturday.jpg
Sunday coiled rope Sunday.jpg

Months

Background Texture: Foil with shiny side showing

MonthSymbolPicture
January "J" made from pipe cleaner January.jpg
February heart made from pipe cleaner February.jpg
March clover shape made from pipe cleaner March.jpg
April "A" made from pipe cleaner April.jpg
May four brads in square configuration May.jpg
June circle made from pipe cleaner June.jpg
July square made from pipe cleaner July.jpg
August vertical piece of popsicle stick August.jpg
September 1 horizontal paper clip September.jpg
October "X" made from pipe cleaner October.jpg
November triangle made from pipe cleaner November.jpg
December sequins, face down, in a circle December.jpg

Miscellaneous time

Background Texture: Plain poster board

TimeSymbolPicture
Afternoon nickel-sized circle made from 1/8" thick foam afternoon.jpg
Morning rectangle made from 1/8" thick foam  
Payday penny to left of two crossed paper clips  

Background Texture: Netting

TimeSymbolPicture
Today ½" piece of Pencil grip glued in center today.jpg
Tomorrow ½" piece of Pencil grip, puff Paint arrow on right side --> tomorrow.jpg
Yesterday ½" piece of Pencil grip, puff Paint arrow on left side <-- yesterday.jpg

Background texture: Contact Paper

TimeSymbolPicture
Second 1 small Bead glued in center second.jpg
Minute 2 small Beads glued in center  
Hour 3 small Beads glued in center in a vertical row hour.jpg

Meaning Category:  EVENTS (Background Shape: Rectangle)

Background Texture: Acetate (satin)

EventSymbolPicture
Astroworld star-shaped plastic bead with pipe cleaner circle around astroworld.jpg
Beach trip small scallop shell beach.jpg
Birthday birthday candle birthday.jpg
Camping trip tent made with braille paper camping.jpg
Carnival star-shaped plastic bead carnival.jpg
Christmas small Christmas light (old fashioned type) glued horizontally christmas.jpg
Cinco de Mayo balloon with tinsel pipe cleaner in zig-zag on it with a bean underneath cincodemayo.jpg
Community Outing rectangle piece of Lawn chair webbing with rectangle piece of Vinyl grid glued below webbing  
Concert Bell  
Easter a bunch of Easter grass with wood Bead in center  
Field Day laminated cardboard circle with 3 ribbons around it (size of a quarter, get from food blanks) fieldday.jpg
Graduation scroll of paper (use any scrap of paper) graduation.jpg
Halloween 1/8" Foam cut in jack0o-lantern shape with Stick stem, Dental Floss coming out eyes, mouth, to give feel of stringy stuff  
Mother's Day crossed ribbons (like on a present) with mini bow at intersection and "home foam" (foam peanut) to right mothersday.jpg
Music Mania 3 little Balloons glued on top of one another and a Bell glued to the left of the balloons  
Party balloon party.jpg
Period piece of sanitary napkin period.jpg
Picnic textured piece of Styrofoam plate picnic.jpg
Schlitterbahn chamois "W" with star-shaped bead in middle of it schlitterbahn.jpg
Special Olympics 5 interlocking circles from puff paint specialolympics.jpg
Thanksgiving Feather with Balloon stapled in center  
Vacation 2 Sequins with Pipe cleaner "V" below sequins  

Meaning Category: PLACES (Background: Square Needlepoint backing (vinyl grid))

School-Based Locations

LocationsSymbolPicture
Auditorium square of textured Milk jug plastic, 1 side curled under auditorium.jpg
Bathroom blank square with hole punched in top middle with yarn loop through hole bathroom.jpg
Bedroom piece of bedspread or fabric swatch bedroom.jpg
Bowling Alley Felt square with Cork circle on top  
Cafeteria X made from popsicle sticks cafeteria.jpg
Classroom rubber bands strung across square in a cross (with each teacher's name symbol) classroom.jpg
Computer Room felt square with cork circle on top computerroom.jpg
Dorm 2 3/4" ceramic tiles, one in upper left and one in lower right corner dorm.jpg
Game Room round tinker toy Game Room.jpg
Group Home straws in house top shape grouphome.jpg
Gym piece of wrist band/sock or ponytail holder gym.jpg
Health Center cotton ball health center.jpg
Kitchen piece of crinkly pie pan kitchen.jpg
LRC round spool from cassette tape lrc.jpg
Laundry Room 2 ¾" Buttons glued side by side laundryroom.jpg
Music Room jingle bell music room.jpg
Outside 2 Leaves glued diagonally with Stick in center outside.jpg
Office row of thumbtacks with point cut off office.jpg
Playground pebbles playground.jpg
Pool piece of tool pool.jpg
Recreation Building circle made from acrylic paint recreation building.jpg
School 3 1/2" vertical sandpaper strips school.jpg
Sensory Room 3 Light Brite lights in "Y" shape sensoryroom.jpg
Track shoe string track.jpg
TV Room Brad spread out into a "V" shape t.v.jpg
VATC pen cartridge Vact.jpg
Weight Room ponytail holder and nut and bolt weight room.jpg
Whirlpool smooth part of bottom of pie plate whirlpool.jpg
Work Skills Room nail and screw glued horizontally; nail on top, screw 1/2" below workskills room.jpg

Off-Campus Locations

LocationsSymbolPicture
Bakery restaurant straw glued horizontally with mini cupcake cup underneath bakery.jpg
Bank 3 pennies in glue lined rectangle bank.jpg
Beach shell beach.jpg
Bowling Alley felt strip bowling alley.jpg
Brackenridge Hospital glass medicine vial brackenridge hospital.jpg
Car Wash sponge with penny glued on top car wash.jpg
Cave pebbles in circle cave.jpg
Church church shaped building made from cedar craft shingles with a cross made of toothpicks on rooftop church.jpg
Clifton Center piece of towel with paper clips in cross on top clifton center.jpg
Ecology Action piece of plastic from liter coke bottle ecology action.jpg
Farmers Market woven Straw shape of bushel basket ½ oval with Rickrack glued across the straw farmersmarket.jpg
Fire Station match stick fire station.jpg
Garden sand in square  
Group Home Straw with bend part bent over in house top shape grouphome.jpg
HEB small, laminated, oval HEB written in Braille below Braille, Printed word in black marker heb.jpg
Highland Park Mall Mall symbol with small Pom-pom in center highland park mall.jpg
Home styrofoam pellets home.jpg
Hospital + from pipe cleaner hospital.jpg
Lake plastic bag in circle lake.jpg
Laundromat piece of towel and penny laundromat.jpg
Leander "L" made of pipe cleaner leander.jpg
Mall ric-rac in square mall.jpg
Marriott foam sponge with paper clips in cross on top marriot.jpg
Movie wrapper from Reese's cup movie.jpg
Museum doll's eye museum.jpg
Park stick park.jpg
Post Office piece of string post office.jpg
Pro. Counselor X made from acrylic paint pro.jpg
Recording for the Blind tape from inside of cassette with 2 crossed paper clips on top recording for the blind.jpg
Skating Rink 2 Pom-poms side by side skating rink.jpg
Restaurant piece of straw, horizontal restaurant.jpg
Bakery piece of straw with cookie paper underneath it bakery.jpg
Central Market plastic sample Spoon diagonally across tinsel Pipe Cleaner bordering other 2 corners centralmarket.jpg
Chicken restaurant rest. piece of straw with Q-tip underneath it chicken rest.jpg
Chinese restaurant piece of Straw with Chopstick piece underneath it  
Italian restaurant piece of Straw with Spaghetti underneath it  
McDonald's piece of straw with "M" made from foam underneath it mcdonald's.jpg
Taco restaurant piece of straw with shiny pipe cleaner in a circle underneath it taco rest.jpg
Roffler's small plastic hair curler  
Store plastic grocery bag store.jpg
Book store miniature Book with Garbage bag glued below it bookstore.jpg
Drug store plastic grocery bag + toothpaste cap below it drugstore.jpg
Fish store plastic grocery bag + fish made from puff paint below fishstore.jpg
Grocery store plastic grocery bag + piece of bread bag with twistie wrapped around it under it grocerystore.jpg
Music store plastic grocery bag with bell inside musicstore.jpg
Pet store plastic grocery bag + rawhide animal treat below it petstore.jpg
Plant store plastic grocery bag + seed below it plantstore.jpg
Toy store plastic grocery bag + lego below it toystore.jpg
Texas Dept. of Health Foam in shape of Texas with cotton on top  
Texas State Library microcassette TXstatelibrary.jpg
U.T. Track piece of shoestring glued on top of chair webbing UTtrack.jpg
Video Arcade diagonal ric-rac (top left to bottom right) with penny in middle videoarcade.jpg
Zilker Park pipe cleaner "Z" over stick zilkerpark.jpg
Zoo plastic animal zoo.jpg

Meaning Category:  PEOPLE (Background Shape: Circle)

Background Texture: Bumpy vinyl wallpaper-type covering

PeopleSymbolPicture
Residential Specialist individualized ri.jpg
School Doctor 1/2 of a Q-tip school doctor.jpg
School Nurse Medicine cup on its side school nurse.jpg
Support Staff individualized support_staff.jpg
Teacher individualized teacher.jpg
Teacher's Assistant individualized ta.jpg
Teacher (generic) Book glued in center – book made from tiny yellow sticky Pads  
Class "C" shape ring from plastic Chain  
Attendant Bull dog clip  
Audiologist glue coil audiologist.jpg
Boss blue "B" boss.jpg
Bus Driver steering wheel shape made of glue bus driver.jpg
Dentist Toothbrush  
Doctor piece of rubber glove doctor.jpg
Ear Doctor backwards question-mark made of glue ear doctor.jpg
Eye Doctor eye shape made of glue eye doctor.jpg
Farmer square of Jean fabric with metal Button cover on top  
Fire Fighter circular slice of hose (garden hose/rubber tubing) fire fighter.jpg
Job boss Shoestring piece in open loop (like apron)  
Mailman Foam square cut with pinking shears  
Office Worker circle made of thumbtacks with points cut off office worker.jpg
Plant Worker plastic leaf or plastic flowers plant worker.jpg
Police badge shape made of glue police.jpg
Store Worker glue "S" store worker.jpg
Trash Collector Plastic square (clear)  

Meaning Category:  EMOTIONS (Background Shape: Heart)

Background Texture: Plain poster board

EmotionSymbolPicture
Anxious "S' hook on its side anxious.jpg
Excited 4 pieces of ribbon curled with scissors excited.jpg
Frustrated knot made from nylon string/rope frustrated.jpg
Gentle feather with pom pom glued on top gentle.jpg
Happy smile made from nylon string happy.jpg
Hurt vertical matchstick hurt.jpg
Love heart made from nylon string love.jpg
Mad vertical row of knots made from nylon string mad.jpg
Patient flower bead or silk flower patient.jpg
Sad/Depressed frown made from nylon rope/string (upside down smile) saddepressed.jpg
Sick vertical piece of nylon rope/string with a glue dot on top sick.jpg
Tired arrow made from nylon rope pointing down tired.jpg

Meaning Category:  NON-FOOD OBJECTS (Background Shape: Oblong)

Background Texture: Plain poster board

Clothing

Clothing ArticleSymbolPicture
Boots leather shoe string tied in a knot boots.jpg
Bra hook from a hook and eye bra.jpg
Coat rectangular piece of wool or felt, 1" x 2" piece Men's underwear piece of elastic coat.jpg
Pants hem piece from old blue jeans pants.jpg
Panties piece of old panties with elastic and nylon panties.jpg
Shirt 3 buttons glued in a vertical row on piece of fabric shirt.jpg
Shoes shoe string in a cross (let ends dangle to avoid confusion with cafeteria) shoes.jpg
Socks toe of sock socks.jpg
Sweater piece of sweater sweater.jpg

Cooking Appliances/Materials/Utensils

Cooking Appliances/
Materials/Utensils
SymbolPicture
Blender 3 holes punched in a horizontal row blender.jpg
Bowl styrofoam half-circle bowl.jpg
Cup end of eraser cup.jpg
Fork plastic fork prongs fork.jpg
Grater screen glued on card grater.jpg
Juice machine holes punched around outside of oval juice.jpg
Knife piece of plastic knife knife.jpg
Microwave square of hard plastic with small fuzzy piece of velcro in middle microwave.jpg
Oven vertical stripes across oval made with acrylic paint oven.jpg
Pan pan made with acrylic paint pan.jpg
Pitcher top of film canister pitcher.jpg
Plate 1 1/4" circle cut from styrofoam plate plate.jpg
Refrigerator strips of strawberry basket glued in vertical stripes refrigerator.jpg
Spoon piece of plastic spoon spoon.jpg

Hygiene Supplies

Hygiene SuppliesSymbolPicture
Brush/Comb vertical strip of sandpaper with fringe cut on right side brush.jpg
Deodorant top of bottled deodorant deodorant.jpg
Hearing aid batteries batteries  
Shampoo bottle top shampoo.jpg
Soap piece of soap box soap.jpg
Toothbrush end of toothbrush toothbrush.jpg
Toothpaste top from container toothpaste.jpg

Vehicles

VehiclesSymbolPicture
Bike jumbo paper clip bent like handle bars bicycle.jpg
Boat paper triangle boat.jpg
Bus bubble plastic bus.jpg
Plane miniature airplane plane.jpg
Tractor plastic wheel tractor.jpg
Van/Car piece of lawn chair webbing van_car.jpg

Recreational Objects

Recreational ObjectsSymbolPicture
Book/Journal miniature book or book made from tiny yellow sticky pad book.jpg
Computer cork disc glued on felt square computer.jpg
Game flat marble game.jpg
Connect 4 checker with marble glued on top of it connect_four.jpg
Movement game flat marble + piece of tinsel garland glued below it movement_game.jpg
Outdoor game flat marble + golf tee glued below marble outdoor_game.jpg
Table game flat marble + domino glued below marble table_game.jpg
Video game flat marble w/ cork disc glued on top of felt square below it video_game.jpg
Foot massage machine 3/4" bottle top from beer or coke bottle with serrated edges side up foot_massage.jpg
Hammock 1 inch piece of 3/4" thick rope hammock.jpg
Hamster food circle of hamster food hamster_food.jpg
Hamster litter circle of hamster litter hamster_litter.jpg
Headphones piece of phone cord with foam wedge on end headphones.jpg
Keyboard row of pieces of 1" pieces of popsicle sticks keyboard.jpg
Lotion top from milk jug with top side glued down lotion.jpg
Merry-go-round plastic monkey (from "Barrel of Monkeys") merrygoround.jpg
Moonwalk padded vinyl rectangle (from "Good Books") moonwalk.jpg
Pegboard peg pegboard.jpg
Piano metal fastener glued horizontally  
Plant pinto beans plant_gardening.jpg
Powder top from milk jug with hole punched in it powder.jpg
Skates circle of 1/2" pom-poms skate.jpg
Slide ladder made of toothpicks slide.jpg
Swing piece of chain swing.jpg
Tape Recorder 4 one inch pieces of pipe cleaner glued vertically tape recorder.jpg
Trampoline pen spring glued vertically trampoline.jpg
Treadmill piece of rubber from handgrip, cut in half horizontally treadmill.jpg
Vibrator fake fur cut in a "V" shape vibrator.jpg
Yo-yo string with flat marble on it yo-yo.jpg

Miscellaneous

Meaning Category:  FOOD

Backing Shape: Oval
Background Texture: Laminated

Beverages

Beverages
BeveragesSymbolPicture
Chocolate milk lid from Nestle Quik powder chocolate milk.jpg
Coffee coffee grounds glued to cardboard coffee.jpg
Coke coke tab coke.jpg
Dr. Pepper 2 coke tabs dr. pepper.jpg
Root beer 3 coke tabs with the third glued horizontally between the other two root beer.jpg
Iced tea tea bag string with tag iced tea.jpg
Juice plastic strip from juice can juice.jpg
Kool-aid top strip of kool-aid package kool-aid.jpg
Milk top of milk carton like a tent milk.jpg
Water "W" cut from fake chamois cloth water.jpg

Desserts

Desserts
DessertsSymbolPicture
Candy foam pellet wrapped in candy wrapper candy.jpg
Cookies plastic end with metal tie of an instant cookie dough wrapper cookies.jpg
Cupcake 1 1/2" of cupcake holder cupcake.jpg
Donut 1 1/2" circle of felt with hole in the middle  
Ice cream wooden spoon ice_cream.jpg
Pudding piece of foil top from individual pudding container with pull tab up pudding.jpg
Yogurt pie shaped piece cut from yogurt lid yogurt.jpg

Fruits

Fruits
FruitsSymbolPicture
Apple large 1/2" sequin apple.jpg
Banana curved row of small sequins banana.jpg
Generic fruit curved row of 7 small, round beads with 2 large sequins below them generic fruit.jpg
Orange circle of 8 1/4" beads orange.jpg

Meats and Protein

Meats and Protiens
Meats and ProteinSymbolPicture
Bacon 2 wavy lines made with puff paint bacon.jpg
Cheese plastic milk jug square cheese.jpg
Chicken q-tip end chicken.jpg
Chicken Nuggets 4 q-tip ends, with sticks removed, in a circle up, down, up, down, side by side chicken nuggets.jpg
Eggs glue glob eggs.jpg
Fish Jesus fish symbol made with puff paint fish.jpg
Hamburger button hamburger.jpg
Hot dog tiny safety pin hot dog.jpg
Meat circle made of leather meat.jpg
Sausage 3 penny-sized circles of leather, side by side sausage.jpg

Spreads

Spreads
SpreadsSymbolPicture
Butter cardboard butter pat square from cafeteria butter.jpg
Jelly restaurant jelly container upside down jelly.jpg
Ketchup horizontal row of 4 cork dots with acrylic paint cross on each ketchup.jpg
Mayonnaise horizontal row of 4 cork dots mayonaise.jpg
Mustard horizontal row of 4 cork dots with acrylic paint dot on each mustard.jpg
Peanut butter "P" made of foam plate peanut butter.jpg
Syrup top of pop-up syrup container syrup.jpg

Starches

Starches

StarchesSymbolPicture
Bread twist tie bread.jpg
Cereal- cold box top with tab and wax bag glued above it cereal- cold.jpg
Cereal- hot oatmeal glued on card cereal-hot.jpg
Chips rectangular foam strip chips.jpg
Corn piece of popcorn corn.jpg
French fries corrugated cardboard strip french fries.jpg
French toast egg symbol (glue circle) with bread twist tie under it french toast.jpg
Generic grain 2 oblong beads in wide "V" shape with oatmeal below it generic-grain.jpg
Macaroni and cheese macaroni noodle with milk jug square (cheese symbol) below it macaroni and cheese.jpg
Noodles a macaroni noodle noodles.jpg
Pancakes circle of felt pancakes.jpg
Popcorn five pieces of uncooked popcorn glued in domino "5" configuration popcorn.jpg
Potato oval shape made from soft part of velcro potato.jpg
Hash browns rectangle made of 3 horizontal strips and 3 vertical strips from soft part of velcro hash browns.jpg
Mashed potatoes ric-rac shape cut from soft part of velcro mashed potatoes.jpg
Tater-tots 3 tiny ovals cut from hard part of velcro tater-tots.jpg
Spaghetti 7 one inch pieces of spaghetti glued vertically spaghetti.jpg
Waffles strawberry basket piece waffles.jpg

Vegetables

Vegetables

VegetablesSymbolPicture
Broccoli vegetable symbol with clump of plastic Easter grass glued in middle broccoli.jpg
Carrots vegetable symbol with felt disc glued in middle carrots.jpg
Coleslaw red crinkly ribbon glued on top of vegetable symbol coleslaw.jpg
Green beans vegetable symbol with horizontal sandpaper strip glued on top of it green_beans.jpg
Salad vegetable symbol with Easter grass glued on top of plastic, horizontal sandpaper strip at right hand corner diagonally, and a felt disc glued at bottom left hand corner salad.jpg
Vegetable square from textured part of clear, corrugated plastic salad plate used at salad bars (leave lip up) (*filed under "salad bar plastic") vegetable.jpg

Miscellaneous

Miscellaneous Foods
MiscellaneousSymbolPicture
Casserole beans and rice glued randomly on card casserole.jpg
Enchiladas zig-zag of tinsel pipe cleaner enchiladas.jpg
Pizza circle of poster board cut with one triangular piece missing pizza.jpg
Sandwich 2 twist ties/bread ties glued vertically with circle made from leather in between them sandwich.jpg
Sausage and Biscuits leather circle with twist tie glued on top sausage and biscuits.jpg
Snack vertical row of staples, stapled vertically (protect back with glue) snack.jpg
Tacos coil of tinsel pipe cleaner tacos.jpg

Meals

Meals
MealsSymbolPicture
Breakfast large "B" made with hot glue gun breakfast.jpg
Dinner large "D" made with hot glue gun dinner.jpg
Lunch large "L" made with hot glue gun lunch.jpg

Meaning Category:  ACTIONS

Backing Shape: Triangle
Background Texture: Felt

Actions
ActionsSymbolPicture
Art piece of crayon art.jpg
Baseball large baseball shape made with hot glue gun baseball.jpg
Basketball ball 1" in diameter glued in the middle of the triangle basketball.jpg
Bathe soap sliver bathe.jpg
Break/Crack large egg shape made from cardboard cracked down the middle with cracked, jagged edges break_crack.jpg
Buy plastic grocery bag with penny in the middle buy.jpg
Carry 2 ceramic tiles glued on top of one another, bottom tile is a 3/4" square tile and the top one is a 3/8" square tile carry.jpg
Chew class triangle of bumpy vinyl wall covering with 3 popcorn seeds underneath chew class.jpg
Choose pipe cleaner "O" and "X" with glue line down the middle choose.jpg
Clean room 1" square of material with 1/4" x 3/4" piece of sponge glued on top of it clean room.jpg
Cook "C" made from glue cook.jpg
Cut blade end of plastic knife cut.jpg
Dance bow made from ribbon dance.jpg
Drink upside down cork "T" drink.jpg
Eat piece of plastic spoon glued upside down eat.jpg
Exercise piece of tinsel garland exercise.jpg
Fire drill 2 matches spaced 1/2" apart fire drill.jpg
Fishing split shot on end of fishing line attached to tiny stick fishing.jpg
Get dressed square piece of plastic mesh, 1/2" x 1" get dressed.jpg
Grooming fingernail file grooming.jpg
Horseplay small plastic horse horse play.jpg
Jump clothespin jump.jpg
Language Arts one inch square of cedar craft shingle with fancy circular plastic disk (tracer) glued on top language arts.jpg
Laundry 2 buttons in horizontal row laundry room.jpg
Listen to music jingle bell listen to music.jpg
Listen to radio small, round, silver, symbol-like piece listen to radio.jpg
Make 2 one inch square cedar craft shingles, stacked and glued together make.jpg
Massage bulldog clip and domino massage.jpg
Masturbate fake fur masturbate.jpg
Math an equal sign made of 2 horizontal glue gun lines, 1" long math.jpg
Measure a third of a medicine cup (side and bottom) with curved side glued down measure.jpg
Meeting triangle piece of plastic mesh meeting.jpg
Movement Class bow made from ribbon with a marble glued in middle movement class.jpg
Open hole punched in middle of triangle

open.jpg

Orientation and Mobility piece of PVC pipe glued horizontally orientation and mobility.jpg
Phone calling coiled piece of telephone cord phone calling.jpg
Plant/Gardening seed plant_gardening.jpg
Play game marker play.jpg
Pour corrugated plastic tubing pour.jpg
Push circular wooden bead, 1/2" in diameter push.jpg
Read miniature book or book made from tiny yellow sticky pad read.jpg
Relax sheepskin piece relax.jpg
Ride rubber strip from fat rubber band ride.jpg
Run shoe string in circle run.jpg
Sack lunch little lunch sack made from a paper bag with top folded over sack lunch.jpg
Science activity textured craft stick, similar to a popsicle stick, glued horizontally science activity.jpg
Set table 1" round piece of styrofoam (plate) with bottom half of eraser (cup) glued above and to the right of the plate settable.jpg
Shave head of disposable razor without blade shave.jpg
Shower shampoo top shower.jpg
Skate 1 pom pom skate.jpg
Snack vertical row of staples, stapled vertically (protect back with glue) snack.jpg
Soccer round foam circle soccer.jpg
Start 1/2" wooden bead with horizontal glue line above it start.jpg
Stir 1 1/2" piece of straw with bottom half cut open and shaped to look like a spoon (shaped like a slurpee straw) stir.jpg
Swim triangle cut out of towel swim.jpg
Swing chain, glued vertically swing.jpg
Talk time/Conversation fancy circular plastic disc (tracer) glued on top of plastic mesh triangle conversation.jpg
Tennis 1 1/4" round piece of mesh with 1/2" plastic bead glued on top of it tennis.jpg
Vacuum ink cartridge of a ballpoint pen bent to resemble a stand-up vacuum cleaner, glue used to accentuate the parts of the vacuum cleaner (wheels, bag, handle) vacuum.jpg
Walk poster board triangle walk.jpg
Wash/Clean slice of sponge wash.jpg
Wash dishes piece of plastic spoon glued with bowl side up with piece of sponge glued inside it washdishes.jpg
Work an "X" made from 2 linked paper clips work.jpg
Can crushing 2 linked paper clips above a piece of crushed can cancrushing.jpg
Coke job 2 linked paper clips above a coke tab coke_job.jpg
Mail job 2 linked paper clips over a piece of envelope with sticky piece free mailjob.jpg
Newspaper job 2 linked paper clips above roll of newspaper newspaperjob.jpg
Plant job 2 linked paper clips above a bean glued on card plant_job.jpg
Plastic sorting 2 linked paper clips over a piece of plastic from milk container plasticsorting.jpg
Recycling 2 linked paper clips above a piece of plastic from a liter coke bottle recycling.jpg
Sort silverware 2 linked paper clips above a plastic fork piece, prongs down sortsilverware.jpg
Tape job 2 linked paper clips over a piece of audio tape stapled to a card tape_job.jpg
Towel folding 2 linked paper clips glued over a piece of towel towelfolding.jpg
Trash dumping 2 linked paper clips over trash bag piece trashdumping.jpg

Meaning Category:  MISC./FUNCTOR WORDS

Backing Shape: Trapezoid
Background Texture: Lined braille paper

MISC./FUNCTOR WORDSSymbolPicture
Canceled large "X" made of glue cancelled.jpg
Finished plain poster board with bottom fringed finished.jpg
Goodbye two vertical leather strips glued far apart goodbye.jpg
Help full braille cell Help.jpg
Hi two vertical leather strips glued close together

hi.jpg

More black binder clip clipped to top of symbol more.jpg
No "X" made of pipe cleaner, very small as in "choose" symbol no.jpg
Yes "O" made of pipe cleaner yes.jpg

Backing Shape: Green diamond
Background Texture: Plain poster board

Left Puff paint "L" on left side of diamond with an arrow pointing toward it {L<-} left.jpg
Right Puff paint "R" on right side of diamond with an arrow pointing toward it {->R} right.jpg

Meaning Category:  GYM SYMBOLS

Backing Shape: White oblong
Background Texture: Plain poster board

Gym Symbols
GYM SYMBOLSSymbolPicture
Aerobics Wooden heart aerobics.jpg
Balance Beam 1" wooden ruler balancebeam.jpg
Ball Piece of red kickball ball.jpg
Barrel Film canister barrel.jpg
Bicycle Large paper clip twisted into handlebar shape bicycle.jpg
Bicycle helmet Half bubble ball, open side down bicyclehelmet.jpg
Bolster/Mat Ceramic disc on vertical vinyl cloth bolster_mat.jpg
Bricks Corrugated backside of piece of ceramic tile bricks.jpg
Bubble ball pit Two bubble balls side by side bubbleballpit.jpg
Canvas hammock Large nylon rope, horizontal hammock.jpg
Climbing rope Tic-tac-toe symbol made of yarn climbingrope.jpg
Colored mat ric rac glued next to each other, horizontally coloredmat.jpg
Elastic exerciser Pipe cleaner in a handle shape elasticexerciser.jpg
Flatbed swing Chain link, vertical on carpet rectangle flatbedswing.jpg
Goal mouth (basketball) Goal made with pipe cleaner and netting with flat marble above it basketball.jpg
Moonwalk Square of vinyl cloth moonwalk.jpg
Music Cassette case music.jpg
Pogo stick 1" piece of pvc pipe glued vertically pogoswing.jpg
Rocker boat Wooden spool glued horizontally rockerboat.jpg
Roller skates Five pompoms glued in a circle roller_skates.jpg
Scooterboard Toy wheel scooterboard.jpg
Sit-up table 2" white triangular sponge glued horizontally so it's at an angle on the background sit-uptable.jpg
Smooth bolster Square piece of rubber glove or balloon smoothbolster.jpg
Softball Wooden toy bat with flat marble above it softball.jpg
Spinning swing Large nylon rope glued horizontally spinningswing.jpg
Stairs 3 pieces of popsicle sticks in ascending lengths glued on top of each other like stairs stairs.jpg
Swedish ladder 2" long varnished wooden bead glued horizontally swedishladder.jpg
Trampoline Pen spring glued vertically trampoline.jpg
Trapeze Circle of yarn with small piece of a straw around it at the bottom trapese.gif
Tunnel 2" tunnel shape made of chamois cloth tunnel.jpg
Twirler Pipe cleaner around a piece of tubing from flowers twirler.jpg
Vaulting box 1 1/2" styrofoam cube glued horizontally vaultingbox.jpg
Wrist weights Two flat marbles wrapped in vinyl cloth wristweights.jpg

American Association of the Deaf-Blind - The American Association of the Deaf-Blind (AADB) is a consumer membership organization of, by and for people with combined vision and hearing loss. Membership is available to any person with a vision and hearing loss, as well as supporters such as family members, professionals, and interpreters.. TXDBA's mission is to bring people who have hearing and vision loss, their families, friends, and professionals together to understand hearing and vision loss and to cope by supporting each other.

American Council of the Blind - The American Council of the Blind strives to increase the independence, security, equality of opportunity, and quality of life, for all blind and visually-impaired people.

American Council of the Blind of Texas - The American Council of the Blind of Texas, Inc. (ACBT) was organized in Waco in 1978 as an affiliate of The American Council of the Blind (ACB). The mission statement of ACB states that the American Council of the Blind “strives to increase the independence, security, equality of opportunity, and to improve quality of life for all blind and visually impaired people.” ACBT subscribes to this mission statement and works to be an advocacy organization and positive, proactive support system to Texans who are blind or visually impaired. Our state motto is TEAM – Together Everyone Achieves More. Although the majority of members are blind or visually impaired, sighted persons who share the common goals and interests of our organization are also welcome to join. ACBT currently has ten chapters and six special interest affiliates.

Association of Education and Rehabilitation of the Blind and Visually Impaired (AER) - The mission of AER is to support professionals who provide education and rehabilitation services to people with visual impairments, offering professional development opportunities, publications, and public advocacy.

Charge Syndrome Foundation - The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management.

Deaf-Blind International (DbI) - The Deaf-Blind International is the world association promoting services for individuals with deafblindness.

Learning Ally - The world's largest provider of audio text for individuals who have disabilities impairing their access to print.  This organization now has a lot of information and training for parents on their website.

National Center on Health, Physical Activity and Disability - This organization promotes and advocates for improvement of physical health and participation in regular physical activities for people with disabilities.

National Federation of the Blind - Founded in 1940, the NFB advocates for the civil rights and equality of blind Americans, and develops innovative education, technology, and training programs to provide the blind and those who are losing vision with the tools they need to become independent and successful.

National Federation of the Blind of Texas - The Texas chapter of NFB.

National Organization for Albinism and Hypopigmentation (NOAH) - NOAH is an organization that offers information and support to people with albinism, their families and the professionals who work with them.

Optic Never Hypoplasia / Septo-Optic Dysplasia Focus Families - Provides information, support and networking for families of individuals with Optic-Nerve Hypoplasia and Septo-Optic Dysplasia.

Texas Association of Blind Students - TABS is a membership organization devoted to the advancement of blind students of all ages. Since its inception in 1990, TABS has worked on multiple levels to encourage the equal participation of blind individuals in all functions of society. Through instructional seminars, state and national conventions, legislative action, social events, and literature, we strive to promote independence and self-advocacy. The organization operates as a whole under the principle that inside and outside the classroom blind students are fully capable of leading normal productive lives. In order to reinforce this belief, it is necessary to view the change within blind students themselves. Thus, our ongoing objective is to work in conjunction with the National Association of Blind Students (NABS) and to a larger extent with the National Federation of the Blind (NFB) to build a sturdy foundation of useful skills, solid confidence, and raw determination so that we may in turn show the public that blindness is not the limitation it is thought to be. In essence, the primary goal of TABS is to follow its parent organizations in changing what it means to be blind.

Texas Deaf-Blind Association Texas Deaf-Blind Association (TXDBA) is an organization for people who live in Texas with combined hearing and vision loss. Our members are deaf-blind, deaf with low vision, hard of hearing with any kind of vision loss, family members, friends, interpreters, support service providers (SSPs), and professionals who work with people with combined hearing and vision loss

From the Winter 98 issue of See/Hear Newsletter, published by TSBVI Outreach and compiled from conversation on the Deaf-Blind List.

by Kate Moss, TSBVI Deafblind Outreach

One of the many issues parents of young adults with Usher Syndrome and other conditions that result in low vision face is whether or not to let their son or daughter get their driver's license. This topic was discussed at great length recently on the Deaf-Blind List. Because I benefited so much from this discussion, I thought it would be worth sharing excerpts with our SEE/HEAR readers. My thanks to all of the Deaf-Blind List members who participated in this discussion and who were willing to share that discussion with those who do not have access to the List. The discussion in its entirety is available through the Deaf-Blind List archives if you would like to read more. You may access those archives at DB-Link at http://nationaldb.org/ISLibrary.php

 

For many parents of children with low vision, deciding whether or not to let their son or daughter get a driver's license or attempt to drive is a difficult decision. Even though some individuals may have substantial visual field impairments at an early age, they may still be able to pass the Department of Motor Vehicle's (DMV) eye exam since a visual field test which checks peripheral vision is not a part of that exam. Additionally, the driving portion of the test may not take place during the evening hours, so night blindness may also go undetected by the examiners. Students who go through driver education generally do have to undergo part of their driving during twilight conditions, which can create problems for the student with Usher's and some other eye conditions. As you will learn from this discussion, there does not seem to be a "right" answer. For parents of children with Usher Syndrome confronting this issue, I encourage you to:

  • Discuss your child's visual functioning and prognosis with your ophthalmologist or low vision specialist especially as it relates to driving;
  • For the child with Usher Syndrome, discuss "daytime only" driving as an option;
  • Have a frank discussion with your child about his or her vision and the possibility that there may come a time when they can no longer drive; and
  • Contact adults with Usher Syndrome and other parents through support groups or the Usher-List and discuss your concerns with them.

Dorothy Stiefel writes: This is the problem at hand with all young drivers who already know they have compromised vision but "think" they are careful enough. This is denial of another kind. Some really believe their vision is still okay for driving "just in the daytime." Others are hesitant but drive anyway because no one has said they shouldn't be driving. Can we fool ourselves? Usually no, but in the case of peripheral loss, it is so subtle that the would-be but should-not-be drivers do it anyway, mostly because what they are "seeing" that feels like all they should be seeing with. Do you get my drift on this?

Most all of the important mobile activities and contact sports a person engages in, is through the use of the vision's mid-periphery where both cone and rod cells reside. Night vision is governed by the outer perimeter of your field (rod cells), and of course, all detail, acuity and color vision is the responsibility of central vision (cone cells). So, translated here: many episodes of bumping into, knocking down, missing the ball, stepping in holes, etc. are caused by your field of vision having been narrowed past the mid-periphery of sight toward that "tunnel vision" we all talk about. So, if you've been having mishaps out and about on foot, with no explanation for them, what do you think will more than likely happen behind the wheel of a car? Please think carefully on this one.

If a young person has already been diagnosed, becoming a driver may be okay if his field of vision is closely monitored and well within the range of acceptable peripheral sight . . . And, yes, enroll in a driver's education course for people with vision impairment if one is offered in your area. DO NOT drive at night, period; and realize that your driving days are numbered.

The automobile is considered a rite of passage for young males in particular. . . It may be more difficult to deal with quitting what a young male driver has enjoyed for a short time, only to have it taken away from him, than it would be never to have attempted it in the first place.

As Dorothy points out, an important consideration for parents and the student is whether or not they are prepared to lose their driving privileges later on. As you will see, this experience can be quite devastating.

Mary Dignan shared some excerpts from her personal journal of the period when she was coming to terms with life without a driver's license:

February 1989

It hasn't been that bad, a week without driving. In a way, much better than waiting for the inevitable smashup and possible major and even moral injuries. What HAS been bad is the grief and the depression, and the tunnel, which I don't see ending. `You have all kinds of options,' a friend told me. `You just can't see them right now.' He also said that I am not handling things very well"that the issues I have to deal with right now regarding my sight and hearing are so overwhelming that it would be good for me to get some help. He specifically mentioned my anger and the way it is spilling out"exploding"everywhere. Well, I AM angry. I have worked all my life in a world that is not mine, and striven with all I have to communicate with it on ITS terms. Now I look at the television car commercials, and all of a sudden I boil, thinking, damn it, in a world where cars are essential and mobility is success, I now have to figure out how to deal with the world all over again.

I'm tired of this anger, I'm tired of this depression, and I want out. The fact that I don't drive anymore isn't important. The fact that there are options out there is"and it is time for me to claim them. . .

March 1989

So driving, not driving that is, isn't such a big issue. I told my brother last night that I don't miss driving so much as I am missing the ease of mobility. It's not a bad case of restricted mobility, as Andy is an obliging chauffeur. Too much so, in fact to the point that my independence from him is an issue, but it's resolvable.

It's also part of a more basic issue, that of my perception of success and image of myself. I said something about mobility" "mobility is success" "that is a core belief, one that I'm beginning to rattle and shake around, get the dust off, give a reappraisal. There was another one, "cars are essential" I believed it was. That I've already begun to throw out. Personally, driving a car does not necessarily equate with mobility or success. The relationship of mobility to success, on the other hand, is a whole other issue.

From Webster's I note the following significant definitions of being mobile: capable of moving or being moved (movable); changeable in appearance, mood or purpose; adaptable, versatile. Webster's also notes having "opportunity for or undergoing a shift in status within the hierarchical social levels of society." And success is the favorable termination of a venture (i.e. "the attainment of wealth, favor, or eminence"). To succeed is to "turn out well" and to "attain a desired object or end."

The bottom line definition of success, then, can only be a personal definition. Define what it is you want to achieve"to venture"and if you do it well, then you're successful. So, I'm capable of moving and being moved; I'm changeable in appearance, mood and purpose; I'm arguably adaptable and versatile, and as far as I'm concerned I have all kinds of opportunity to "shift my status within the hierarchical social levels of society." But more significant, I have opportunity"options"to shift my status, period, not just in terms of hierarchical social levels. And that's it, right there. Equating mobility with success isn't such a bad thing to do, but it's important to realize that the definition is mine, and it is important to know the definition for what it is. . .

Randy Pope writes: I was diagnosed with Usher II, less than 10 degree (visual fields) total, at the age of 37 back in 1990 of January. Little did I know that diagnosis would change my future forever in a massive way. The doctor told me that I was legally blind and asked me to stop driving. I was stunned and did not know how to respond. Luckily I had a friend with me to drive me home after the eye exam. The shock of the news was overwhelming . . . I could not even talk to anyone, not even my family. You can't even imagine the feelings I was going through. When the initial shock stage had passed, I knew the time had come to carry out the death sentence of my driver's license.

That day ... I left work around 9 a.m. on a sunny day. I only had to walk about a half of a mile to the Department of Motor Vehicles (DMV) . . . it was the longest walk of my life. The DMV building looked like death row. The door seemed like that big heavy steel door in a prison. I opened the door and walked in; funny, for some reason I heard that door close with a loud bang even though I am almost totally deaf. As I approached the desk, the clerk looked like a witch ready to destroy me. . . My whole body was shaken with fears and my mind was whirling like crazy. Tears were running down my face as I gave the clerk my license. She said out loud, but without any passion or feeling, `What was my problem?' I screamed and cursed at her with unprintable language, stating that I was going blind. The other clerk heard me and asked me to come into his office. He listened patiently while I explained my situation with tears and anger. He explained to me that I was making the right decision to protect myself and other drivers on the road ... my freedom was executed on May 1st of 1991.

... My young friends on this list, if you are thinking about getting your driver's license knowing you will lose your vision some day, please don't. The pains and suffering are not worth it. Feelings about losing the license are still there for me. You would be better off not to get it ...

Jeffrey Bohrman agrees: The Great Hippie (Randy Pope) said it loud and clear to the young potential drivers. I was one of the lucky ones who never learned how to drive and I still maintained my independence. It really broke my heart to see many of my friends with Usher's crying when "forced to give up" their licenses ... The pain of becoming blind, losing a job, changing communication modes are bad enough, and I sure didn't need another issue to add.

Still many people feel like Heather Schoenwald feel that the experience of driving was worth going through the loss: I started to drive when I was 15 years old. I enjoyed every minute of it. I worked damn hard to earn my driver's license and after all that work, I was so proud of myself for accomplishing a goal. After I graduated from high school I decided to buy myself a brand new truck. Driving was a big deal to me because it was my freedom . . . I traveled all over and got to see many different things.

When I turned 21 years old I started to have problems seeing in the dark. So I thought . . . all I need is new glasses. . . . The doctor told me that I had Usher's syndrome and he told me to stop driving. I told him that I was going to continue to drive . . . like it or not. I could see just fine during the day, but at night it was hard. . . . I got to drive one more year. I had to stop driving because I became fully blind (as a result of optic neuritis) for three months. I still had my vehicle sitting in the driveway, wondering if I was ever going to drive it again.

One day my parents were not home and I thought it would be cool to just sit in the truck, blast the radio and enjoy it. I was wrong. I got so upset, crying so hard, because in the back of my mind I knew I would never drive again. I started to have nightmares about driving. I was driving; I hit and killed that person. I woke up sweating, heart pounding 100 mph, and I was crying so hard. I told my parents, `Please help me sell the truck, I can't drive anymore.' My parents flipped out and told me that I would get all my vision back and they were not going to sell it. Later my vision (stabilized) and I knew I was finished driving. Finally my parents realized . . . what they had to do. It was very hard for my parents to see something valuable go, something that I worked so hard for.

I am now 24 years old, learning to have a lot of patience with myself and learning to use public transportation. I do miss driving, but I am very happy that I had the experiences of driving. I'll always keep the fun, good memories of having that freedom.

If your child can see, then let them have the experiences of driving . . . if they don't see at night, driving then is not a good idea.

Janet Sand adds: I started driving at age 17 and drove for about 12 years before quitting 20 years ago. I never did drive at night, and the last few years I drove to only three specific, close-by locations . . . I am very glad I did the amount of driving I did. It (1) gave me a feeling of independence and confidence which is still with me; (2) permitted me to develop a sense of direction from a driver's point of view, enabling me to give better directions; and (3) gave me an understanding of automobiles, automobile travel, and the art of driving, all of which are important parts of our culture.

. . . I fortunately never had any kind of accident, and was always aware that my concentration was intense when I drove. I almost never drove other people around because it detracted from my concentration.

My personal feeling is if (a person) is reasonably mature (though 15 or 16 is still pretty young) and has an appreciation for his physical limitations and the responsibility involved; then he should learn to drive and drive regularly if it seems to work out. He will know, of course, that at some point he will most probably have to stop driving because the risks are too great based on his declining vision.

Which brings me to Randy (Pope) and his strong grief over having to stop driving. I really feel that a lot of this comes from his finding out rather late that he had RP (retinitis pigmentosa) and (at the same time learned he) would have to stop driving. The grief over his driving was enmeshed in his grief over the RP as a whole. This is not the case with (your son) and a lot of the others of us who knew from a young age that our vision would decline over the years. I knew that I might some day be blind, but I wasn't then and was capable of driving well (carefully and only in daylight). I expected to have to stop some day . . .

Above all, examining the risk to themselves and to others must be a part of any decision making process:

Tom Peters notes: (One friend in Connecticut) gave up her license just 3 weeks after ... she had a scary, small accident from the late afternoon sun. She tore up her license and sold her car. She said it is not worth carrying the guilt for harming others.

Rich McGann shares this story: (A friend) told me that when he was 16 ... his parents let him drive during the daylight. But he did not know he had Usher's. His parents told him he had to get home at 7 sharp during the spring. When he was at the shopping mall, he met deaf friends and chatted with them. He lost track of time ... it was 10. He tried his best to drive home, and he managed to get home safely ... (Kids) should be given details (about their vision) before they make decisions about taking driver's education.

Randy Pope: Do I want to risk the family's financial situation? No way!!! ... Do you think the insurance will cover the damage resulting from an auto accident? Not necessarily. Worse yet the family whose loved ones get serious injuries or is even killed can sue you way over the limit of the insurance policy if the insurance decides to pay at all.

There are alternatives to being a driver. Here are a few that were mentioned:

Carolyn Alflen notes: If my vision becomes worse, I still need my car because someone will drive (me) ... like an SSP (Support Service Provider) ...

C. C. Davis shares this solution: I have another pair of blind friends, a married couple, who seem to enjoy having their own car. They maintain the car and like to offer it to their friends who drive when they all go out together, or need to run errands. Of course, most of their transportation is public transportation.

Who knows what the future brings? Some of the dreams of those individuals who commented on this topic underline the extreme importance we place on this activity in our society:

Rich McGann suggests: Maybe it would be neat to have electric eyes (on cars) so we can let the computers do the driving and we will feel like we are driving.

Kerry Wadman elaborates: You know those fantastic guiding systems used in missiles ... could also be used in cars ... actually if there were special cars made that would do the guiding for people, then with the exception of software and mechanical failures there would be no accidents even for those who could drive without visual disabilities . . . autopilots do that kind of thing ...

I think Randy Pope sums it up best: Yes, we all should live life to the fullest, like I am doing right now. Most of all losing the driver's license is not the end of the world. I finally learned that. It's tough to live (without a driver's license), but life is not a bed of roses. I am dealing with this pretty well. In fact this experience has taught me quite a bit about life, making me stronger than before. . . By the way, when that dreaded day does come, I will be here along with the others. Giving up your license does not mean you are defeated. You are making a giant leap into the world of courage, strengths, and wisdom where most people will never enter. It will be tough, but you will definitely be stronger than most people.

If you would like more on this topic write to me () or contact some of the other resources below..

National Center on Deafblindness They have a wealth of information on Usher Syndrome and many other topics as well as links to many other helpful websites. For non-Internet users, write or phone DB-LINK at 345 N. Monmouth Ave., Monmouth, OR 97361, (800) 438-9376 (voice) or (800) 854-7013 (TTY).

VisionAware Resources for Independent Living with Low Vision

Driving privileges for low vision patients: a legal, medical, safety issue

Presented at AER 2002, Toronto by Kimberly Avila M.A., COMS

College is an exciting time of learning, growing and achieving goals. Any person attending college, regardless of age and background, goes through a period of transition in which they adjust their lives to accommodate new demands brought on by higher education requirements. Persons who are blind or vision impaired must deal with these challenges along with an entire different dimension of transitional issues that can be challenging. The American Foundation for the Blind found that students with vision impairments are less likely, than their sighted peers, to finish college. (1993) Why are persons with vision impairments less likely to finish college? Furthermore, for those who do complete higher education, how can they prepare themselves for the transition to college to alleviate the added stress of being a college student with a visual impairment?

As a teacher for the vision impaired who works with high school students, I wanted to explore the challenges college students with visual impairments encounter so I could assist my students in preparing themselves for college. As a result, I conducted a study during the summer of 2001 surveying 23 adults who are blind and vision impaired who have had at least some college experience and dealt with challenges in higher education. Participants were asked to provide their input on how upcoming college students can best prepare themselves for a smooth transition. A continual dialogue has developed with several of the adults who responded to the surveys in order to clarify and get further remarks about college life for the vision impaired.

Correspondence, including the distribution of surveys, was done electronically and at meetings of consumer organizations of the blind. Surveys reached all over the United States and beyond, including a rehabilitation program for the blind in New Zealand. Participants were quite diverse in age, background, ethnicities and differed in the amount of years they attended college and degrees earned. Some respondents are current college students; others are successful professionals, business owners, homemakers, members of the Peace Corps, graduate students, farmers and clients of a rehabilitation program for the blind.

The responses to the survey were interesting, yet not surprising. As participants described what areas they could have been better prepared in for a smoother transition, I was quickly reminded of the “Expanded Core Curriculum” Phil Hatlen published years ago. The Expanded Core Curriculum defines areas in which students with vision impairments should receive further instruction. These areas are:

  • Compensatory Skills, including communication models
  • Visual Efficiency Skills
  • Social Skills
  • Independent Living Skills,
  • Recreation and Leisure Skills,
  • Orientation and Mobility
  • Vocational Education and
  • Assistive Technology
    (Hatlen, 1996)

Long before I conducted my survey, the Expanded Core Curriculum had been in place and implemented into the National Agenda as areas defined as needs neglected in general education. However, according to my study, these areas are still being neglected and students are not getting what they need for a smooth transition to college. In the 1998 National Agenda; Report to the Nation by the American Foundation for the Blind, studies also concluded that schools are not allowing adequate time for instruction in and do not have qualified personnel to teach in these areas.

Consistently, respondents marked a need to receive instruction in all of the above-mentioned categories. Moreover, EVERY participant marked an intense need for instruction in the use of adaptive technology in order to be successful and independent in college and employment. All respondents remarked that this is a heavily neglected area that is one of most detrimental factors that impedes their success in college. Several participants stated that they had to pay a large amount of money and spend an excessive amount of time to learn the technologies while in college, which ultimately affected their academics, work and social lives. Below are just some of the quotes made by respondents emphasizing the need for adequate adaptive technology instruction.

“Adaptive technology, this is the bulldozer that levels the playing field” Undergraduate Student who is also employed

“There is no way ANY college student will make it through school without technology. A blind or vision impaired person must have these skills in order to have a fighting chance in school, and to be independent.” Undergraduate Student

“Technology is needed to set the student at an even playing ground. It is vital in a quality education.” Information Technology Consultant

“Technology can, and will make the difference between some semblance of independence and total dependency. Further survival may come down to the issue of adaptive technology” Doctoral Graduate Student

“… the world of employment centers almost exclusively around computers and the ability to access them is vital.” Graduate Student

“…OCR’s, screen magnifiers, screen readers, good computer skills; I am struggling to learn these skills just to be competitive.” Business owner and former Peace Corps Member

“In these ever-more-technical times, I believe it's getting harder and harder to find a job that doesn't require some computer knowledge.” Software Engineer

The other areas that participants felt teachers and rehabilitation programs should focus on are advocacy and social skills, including working with readers and others who assist them. Several participants remarked that they felt very alone moving to college from high school when they realized they had to rely on themselves for taking care of their needs.

“We must learn that we cannot totally rely on services which are supposed to assist us, because there are limited resources and service providers. In order to show that we are independent thinkers and able to take care of ourselves, we must learn how to rely on our self-advocacy skills in order to make gains in employment, etc.” Graduate Student

“Confidence, communication, advocacy, working with people, problem solving, knowing what you want and creating a plan to obtain your goal, these are the crucial skills students with vision impairments must have in order to succeed in college. College Professor

“Social skills go along with fighting the misconceptions and stereotypes some have about blind people. Eye contact should be taught at an early age, and kids should also be taught that "blindisms", like eye poking, rocking, etc. are not appropriate. I am not saying that one should try to look sighted; it is just that we need to look our best and present a confident figure when seeking employment and college admissions.” Graduate Student

“Confidence, Confidence, Confidence” Business owner

“Self advocacy is a very important self confidence and identity builder.” Rehabilitation teacher

“Knowing how to direct readers around a library, knowing how to communicate with those who do not understand my blindness, coming up with reasonable accommodations with my professors, these are things I really had to work on in college.” Business owner

When responding to questions related to Orientation and Mobility and travel, all respondents emphasized how important good cane travel is to their independence and success. However, in almost every survey, participants consistently remarked that one of the most challenging aspects of being blind are issues surrounding transportation and not being able to drive. Some respondents discussed in depth how difficult it was to attend college on a campus that had several mobility obstacles, such as busy streets cutting through campus and several difficult to follow paths around the school. These factors physically put a barrier between these students and their college education.

In regard to independent living, personal care and home management, respondents gave a wide variety of perspectives. Some felt that the training they received from their families or rehabilitation programs in home management was adequate. Others indicated that they had minimal rehabilitation teaching and limited family support, which affected their preparedness to manage their personal lives, finances, home and the like.

“If a young person going off to college does not have a sense of balancing a checkbook and paying bills, disaster could result. I think so many parents do not allow their blind children to handle their own money, but this is something kids must learn.” College Student

“I am glad I had the opportunity to learn how to take care of a home while still living at my parent’s home, I could not imagine learning all of that now with everything else going on.” College Student

“Families cannot shelter their blind children from the world, hoping it will go away. Kids will grow up, and the best way to help them is to let them help themselves. Parents who do everything for their children are not doing them a favor, let them have experiences, and let them make mistakes. It will hurt them a lot less if they make a mistake with a small allowance, or a minor cooking mistake under your care, but if these mistakes are made for the first time outside of your home, the consequences could be horrible.” Teacher

After reading the wide variety of responses, it was evident that some people encounter their most trouble in college because of a lack of instruction in the above-mentioned areas from teachers for the vision impaired, rehabilitation facilities and families. These factors, along with the lack of training in technology, use of self-advocacy and social skills, management of their personal lives impacted the respondent’s academics and social lives in college.

Despite the publicity on the importance of including the Expanded Core Curriculum in a student’s education and the continued findings that pinpoint exactly where discrepancies lie in preparing students for college and employment, thousands of people with vision impairments go to college without the basic tools they need to achieve their goals without undue challenges. Yet, as the National Agenda stated, and the results of my survey confirmed, these crucial areas are still being neglected. I wondered why and so began researching why so many students are lacking these skills. I surveyed teachers, service providers, rehabilitation professionals and persons with vision impairments to get a more conclusive understanding. Most professionals in rehabilitation and education of blind persons are aware that their students and clients will face challenges in college. Many professionals are simply unaware that many resources exist that assist visually impaired people. They realize that their students must take the College Board tests, but do not understand the extensive amount of work it will take to get the accommodations in place for the test.

Students and professionals know that students will receive service from the student’s with disabilities office on campus, but how are those services set up and who is responsible for what? It is known that while on campus, students must attend to their own needs, but how are students to advocate for their needs, work with a reader and manage their personal lives while still maintaining good academic standing in order to actually stay in college? In many cases, it was evident that the challenges these students would face began long before they started their first college class. Participants in the study often remarked that they did not realize they should have investigated the campus and surrounding community even before applying to evaluate the accessibility of the campus. Many respondents indicated that they were in for a rude awakening the first day on campus when they realized the campus was inaccessible to them.

It became clear in my study that students, parents, teachers and rehabilitation professionals need guidelines to teach these skills. This is why I developed the E.X.P.L.O.R.E. Curriculum. My work on E.X.P.L.O.R.E. began as I had some challenges in college as a visually impaired student. It continued as I worked in my graduate school’s office for students with disabilities where I saw other students who are blind enduring the same struggles I had overcome a few years earlier. Now, as a teacher for the vision impaired and after completing this study, the flaws that exist in transition are very clear. E.X.P.L.O.R.E. is an acronym that outlines the steps a person with a vision impairment may use to facilitate a smooth transition. It can be used as an educational curriculum in a school or rehabilitation facility, or by a student alone, or with a parent. It can be adapted for non-traditional aged students and those wishing to attend a community college program or other non-four year degree program.

Below is an outline of the E.X.P.L.O.R.E curriculum.

E: the Eliminator:

This section contains a list of common criteria many participants in the study indicated are crucial in selecting a college that meets the unique needs of people with visual impairments. A student may also customize this list to include, or exclude features that they may or may not need on the college campus.

X: eXamine

Examine what you need for college and devise a plan to work on your areas of need. This section comes straight out of one of the respondent’s suggestions. She said that whenever she faced a challenge, she made two lists, one with all of the positive things that are going on and that she is proud of, and another with a list of what needs to change in order for her to be successful. She picked a couple of things to work on from this list and set goals. In this section, the student will evaluate him or her self and decide what areas need to be worked on for a smooth transition to college. Goals are set from these areas. If the student is in high school, this section assists the student in becoming a leader in creating necessary IEP annual goals that are relevant to the transition plan.

P: Paperwork:

This section outlines and discusses all of the different types of paperwork and documentation you may need in college. It briefly describes where and how to gather this information and guidelines, along with factors to consider when applying to college when you have a disability. Establishing services with your office for students with disabilities is described in this section, along with working with the Department of Rehabilitation Services and other professionals people with vision impairments work with on a regular basis.

L: Legislation:

Learn what laws entitle you to rights in higher education; also learn what your responsibilities are and how to fulfill your end of the bargain.

O: Obligations:

You will have many obligations you need to commit to prior to your first day of classes. Using an agenda book, either in braille, print or electronically is a must. In this section, you will read about scheduling appointments ahead of time with Orientation and Mobility specialists to assist you in getting to know the campus, the cafeteria and the rest of your new environment. You may need to schedule a lesson with a rehabilitation teacher to help you learn how to use the laundry machines at your dorm. Ordering materials, communicating with professors and the office for students with disabilities and taking care of all of those little, but crucial, details is outlined in this section.

R: Rehabilitation:

Attend a rehabilitation program if that is part of your plan you created in the eXamine section. If you do not need a residential program, devise your own rehab program with local resources. This could be attending a community college course to familiarize yourself with attending a college class before you move on to the university. Also, consider the suggestions in this section, such as making your parents have you cook dinner, do your own laundry, assist in grocery shopping and managing money. Although these skills should be taught and practiced all throughout life, they should be focused on during the months before leaving for college.

E: Extra Curricular and Enjoy

Most of the college experience is not academic; it is social. In this section, the student will read some of the funny, and not so funny circumstances other people who are blind and vision impaired experienced in school. Information on dealing with roommates, getting involved, socializing and having an all around “college experience” is outlined in this section.

Materials:

The following are materials used for the E.X.P.L.O.R.E. curriculum.

  • Student day planner book. It is highly recommended the student keep track of appointments, deadlines and goal dates with a day planner in either print, large print, braille or in electronic format.
  • Student data collection book. This is a three ring binder that is used to store important documents. Plastic three-ring sheet covers are put in the blinder that hold and protect documents. The eye-doctor verification sheet, letters of recommendation, transcripts, college essays, résumés, college acceptance letter, are just some of the types of papers stored in this notebook inside the sheet protectors. Braille labels can be put on each sheet protector to allow a totally blind student knowledge of what is inside that pocket. I recommend each student make several copies of these important documents once they are obtained or completed and place the original and copies in one plastic sheet protector. This way, when applications are being completed, or if these papers are needed immediately, the student may simply locate that pocket and remove one copy needed.
  • An E.X.P.L.O.R.E. lesson plan book is also part of the materials. A teacher, parent or rehabilitation professional may use it as a guide for creating transition enrichment activities, or students may use it independently as a guide for their own transition program. Also in this notebook, students may collect other information and articles pertinent to their individual needs. Scholarship applications and other resources are filed in this notebook as well for the student to refer to throughout the college admissions and financial aid procedures. These documents are retained for the student to refer to in following years as a reminder of available scholarships and for contact information so a current application can be obtained.

E.X.P.L.O.R.E. in the Future

The E.X.P.L.O.R.E. curriculum has another phase of study ahead. I have begun to implement it in with high school students I work with. However, within the next few years, I plan to use it with upcoming juniors and seniors. After completing some college, I will have them respond to a survey about the training effectiveness of the E.X.P.L.O.R.E. program. It is my hope to distribute a “beta-testing” version of E.X.P.L.O.R.E. to itinerant teachers, rehabilitation programs and adults with vision impairments to further assess and revise the program.

Works Cited

American Foundation for the Blind, Corn, Anne, Kathleen Huebner ed. A Report to the Nation; The National Agenda for the Education of Children and Youths with Visual Impairments, Including Those with Multiple Disabilities. New York, NY: AFB Press, 1998

American Foundation for the Blind Statistics: Education Attainment http://www.afb.org/info_document_view.asp?documentid=1374#ed 6/4/01

Hatlen, Phil The Core Curriculum for Blind and Visually Impaired Students, Including Those with Additional Disabilities 1996.

by Holly Cooper

Language Concepts

Communication and human interaction as well as the use of tools for learning  must have a solid foundation in concepts.

Children who do not have disabilities learn through direct experience with objects and people, and by observing other people interacting with objects and people.  Later in their development, typical children can learn further concepts by viewing pictures and videos of objects, actions and events.

Children with visual impairments cannot observe the actions of others, cannot observe the objects and actions people talk about, and usually cannot learn from looking at pictures of objects and events.

To attach meaning to words, children with visual impairments must have extensive and repeated experiences with real objects, and how they are used.  Adults teaching or interacting with young children who are blind and visually impaired must provide direct, hands-on experience with objects in their natural contexts, how they function, and ways to activate and use them.

Adults must not just teach kids the names of objects, but how they relate to activities and people.

Adults must make a point to include hands-on contact with objects and the actions of people by bringing the objects to the child or bringing the child to the object action or event (within reason, considering age appropriate issues, and safety)

Children who are very young or have additional disabilities and are not fluent communicators must have repeated experiences with real objects in real situations.  Do not allow yourself to assume that because you have shown the child something once, or even several times, they understand what it is and how it is used.  They may learn only part of the object or situation each time they are exposed.

Don't bombard kids with visual impairments with words.  For young or developmentally disabled visually impaired kids,

  • use short simple sentences
  • think carefully about the literal meaning of commonly used phrases and slang, minimize meaningless or ambiguous words or phrases
  • Use the child's name when you're talking to them.
  • Minimize extraneous noise in the environment (music should be a meaningful part of an activity, otherwise don't have it on, the same with TV and videos.  It's fine as a reward, or as a down time activity.)  Background noise, talk, and music teaches the child not to pay attention, or gives them too much complexity to attach meaning to.

When they are beginning to understand language, tell them simple easily understood information about what is happening:

Here comes your brother, he wants to play with your toy.

You don't want him to?
Don't hit him, say: "No, it's mine"
Can you give him something else to play with?
Pay attention!  When you're in a structured learning situation with the child, minimize your talk with others.
Honor attempts at communication, you don't have to say yes, just say now it's -- time, you can do that during free time

Routines

Routines occur naturally in life at home, work and school.

Leaning skills and concepts in their natural contextattaches more meaning to the content of what is learned, and helps the learner to retain the skills and concepts, and helps kids with blindness and other disabilities generalize the skills and concepts to other situations.

Using routines for learning means we plan events so that they:

  • occur frequently enough to facilitate learning
  • occur at predictable times (after lunch)
  • occur in a predictable fashion regardless of which adult is helping (brushing teeth, preparing morning snack at school)

Being predictable means:

  • The adult can prepare the materials in advance
  • The adult can prepare communication boards or other communication modes or assistive devices for use
  • The child can learn to expect them, and so (eventually) minimize undesirable behavior (like crying or protesting or fixating only on the desired activity)
  • The event (routine) can be "talked" about using symbols, sign language, objects or whatever the targeted mode of communication is, out of context - distant in time and place

Using a symbol for a routine helps build communication, and can be shaped into pre-literacy then literacy activities

Sometimes I hear people say:

He knows he gets free time after lunch, why do they sit him down everyday and say "next is free time"?

We do this because we want him to attach meaning to symbols: words, pictures, object symbols, tactile symbols, natural gestures, simple sign language.

Meaning leads to language, language must be present before literacy can be learned.

Begin to Use Technology for Communication

When you have predictable routine occurring,
When you have established the use of object symbols or other symbols,
Then look for ways to introduce communication devices.

Voice output simple communication devices should be:

  • Prepared in advance
  • Easy to understand and use
  • Accessible to blind and visually impaired students (objects, parts of objects, tactile symbols used as labels)
  • Integrated into a variety of naturally occurring activities
  • Modeled by the adult
  • Used regularly and repeatedly

By Karl R. White, Utah State University, Logan, Utah

Editor's note: In Texas we have made great strides implementing newborn infant hearing screening as a result of The Newborn Infant Hearing Screening and Intervention Act of 1999. We thought you might be interested in knowing more about the importance of early hearing loss detection and intervention, as this program, like many others, will be scrutinized when budgets are drawn up in Washington DC and in Texas. If you have questions or would like to know more about this issue, please contact Karl White in Logan, Utah, at .

Background

Hearing loss continues to be the most common birth defect in America. The Newborn Infant Hearing Screening and Intervention Act of 1999 (as introduced by Representative James Walsh), was incorporated as Title VI of the Labor, HHS and Education Appropriations Act of 1999, and signed into law. This law has enabled federal funds for state grants to develop infant hearing screening and intervention programs. Congress also identified several specific goals to address the problem of hearing loss in children through the Children's Health Act of 2000 (P.L. 106-310), including early hearing screening and evaluation of all newborns, coordinated intervention and rehabilitation services, and ongoing applied research to better understand the learning and developmental needs of deaf or hard-of-hearing children.

Since 1999, the number of states requiring statewide newborn hearing screening by law or voluntary compliance has increased from 11 to 41 states and the District of Columbia. While progress is being made, there is still a long way to go. Only 67% of babies are now screened for hearing loss before 1 month of age (up from only 20% in 1999). To date, over half of the newborns who do not pass the hearing screening are lost to follow-up. Moreover, over half of the infants diagnosed with hearing loss are not enrolled in early intervention programs by 6 months of age.

Over the last three years, there has been more grant applications than funding available, which underscores the need to extend federal funding. Currently, 44 states and 3 territories (out of 50 states and 9 territories) have received HRSA competitive grants for the purpose of implementing statewide EHDI programs. Since these grants have only been operational for 6 months to 2 years, a dedicated source of funding is critical at this time to ensure that state programs become fully operational, successful and properly link screening programs with diagnosis, early intervention and the child's medical home.

Only 30 states have received CDC cooperate agreement grants over the last two years (15 states in FY2000 and another 15 states in FY2001) to assist them in developing strong surveillance and tracking systems. These systems are needed to ensure follow-up and coordination of early intervention services for young children identified with hearing loss. States also face multiple challenges in transferring information about children diagnosed with hearing loss among service providers, the state EHDI programs and early intervention programs.

Facts on Hearing Loss in Children

Everyday in the United States, approximately 1 in 1,000 newborns (or 33 babies every day) is born profoundly deaf with another 2-3 out of 1,000 babies born with partial hearing loss, making hearing loss the number one birth defect in America. (National Center on Hearing Assessment & Management website 2002, Centers for Disease Control website, 2002)

Newborn hearing loss is 20 times more prevalent than phenylketonuria (PKU), a condition for which all newborns are currently screened. (Grosse, 2001).

Of the 12,000 babies in the United States born annually with some form of hearing loss, only half exhibit a risk factor _ meaning that if only high-risk infants are screened, half of the infants with some form of hearing loss will not be tested and identified. (Harrison & Roush, 1996) In actual implementation, risk-based newborn hearing screening programs identify only 10-20% of infants with hearing loss. (Elssmann, Matkin, & Sabo, 1987) When hearing loss is detected beyond the first few months of life, the most critical time for stimulating the auditory pathways to hearing centers of the brain is lost, significantly delaying speech and language development.

Only 67% of babies are now screened for hearing loss before 1 month of age (up from only 20% in 1999). Of the babies screened, only 56% who needed diagnostic evaluations actually receive them by 3 months of age. Moreover, only 53% of those diagnosed with hearing loss are enrolled in early intervention programs by 6 months of age. (National Center on Hearing Assessment website, 2002) As a result, these children tend to later re-emerge in our schools' special education (IDEA, Part B) programs.

When children are not identified and do not receive early intervention, special education for a child with hearing loss costs schools an additional $420,000, and has a lifetime cost of approximately $1 million per individual. (Johnson et al, 1993)

National Recommendations on Early Hearing Detection & Intervention

The Joint Committee on Infant Hearing (Joint Committee on Infant Hearing, 2000) and U.S. Public Health Service's Healthy People 2010 health objectives (Healthy People 2010 website, 2002) recommend that all newborns be screened for hearing loss by 1 month of age, have diagnostic follow-up by 3 months, and receive appropriate intervention services by 6 months of age.

A National Institutes of Health (NIH) Consensus Panel in 1993 recommended hearing screening of all newborns. The consensus report concluded that the best opportunity for achieving this goal is provided by the development of hearing screening programs for newborns in hospital nurseries or in birthing centers, prior to discharge. (National Institutes of Health, 1993)

The U.S. Preventive Services Task Force in 2001 concluded that universal newborn hearing screening does lead to earlier identification and treatment. However, there were not enough clinical studies of sufficient size and strength to evaluate long-term outcomes. While the preponderance of anecdotal evidence and clinical research indicates that EHDI provides substantial benefit, additional clinical outcome studies and clinical trials are needed. (Agency for Healthcare Research and Quality website, 2002)

Methods and Costs for Newborn Hearing Screening

Advances in technology for newborn hearing screening at most birthing hospitals have allowed for cost containment, with current charges ranging from $25 to $60. The cost of identifying a newborn with hearing loss is less than one-tenth the cost of identifying newborns with PKU, hypothyroidism, or sickle cell anemia, which are screened for in nearly every state. (Grosse, 2001)

Two types of electrophysiologic procedures are used to screen newborns singly or in combination:

  • Auditory brainstem responses (ABR) are measured by placing sensors on the baby's head. Sound is then introduced to the baby's ears through tiny earphones while the child sleeps. A computer allows brainwave activity to be recorded to indicate whether the ear and auditory brainstem pathway are responding to sound. This test is painless and takes only about 5 minutes.
  • Otoacoustic emissions (OAE) are faint sounds produced by most normal inner ears. The sounds cannot be heard by people, but can be detected by very sensitive microphones that are placed in the ear canal. During testing, a tiny flexible plug is inserted into the baby's ear and sound is then projected into the ear through the plug. A microphone inside the plug records the otoacoustic emissions that the normal ear produces in response to the incoming sound. Testing is also painless, takes about 5 minutes to complete, and can be done while the baby sleeps.

Benefits of Early Hearing Detection and Intervention

Infants identified with hearing loss can be fit with amplification by as young as 4 weeks of age. With appropriate early intervention, children with hearing loss can be mainstreamed in regular elementary and secondary education classrooms. (Joint Committee on Infant Hearing, 2000) Recent research has concluded that children born with a hearing loss who are identified and given appropriate intervention before 6 months of age demonstrated significantly better speech and reading comprehension than children identified after 6 months of age. (Yoshinaga-Itano & Apuzzo, 1998 and Yoshinago-Itano et al, 1998)

Even mild hearing loss can significantly interfere with the reception of spoken language and education performance. Research indicates that children with unilateral hearing loss (in one ear) are ten times as likely to be held back at least one grade compared to children with normal hearing. (Bess, 1985, Bess, 1998, and Oyler et al, 1988) Similar academic achievement lags have been reported for children with even slight hearing loss. (Quigley, 1978) Children with mild hearing loss miss 25-50% of speech in the classroom and may be inappropriately labeled as having a behavior problem. (Flexer, 1994)

Recent clinical studies indicate that early detection of hearing loss followed with appropriate intervention minimizes the need for extensive habilitation during the school years and therefore reduces the burden on the IDEA Part B program. (Centers for Disease Control and Prevention website 2002 and Ross 2001) In contrast, a 30-year Gallaudet study revealed that half of the children with hearing loss graduate from high school with a 4th grade reading level or less. (Gallaudet Research Institute website, 2002)

References

Bess, F. The minimally hearing-impaired child. Ear and Hearing, 1985; 6:43-47.

Bess, F., Dodd-Murphy, J. and Parker, R. Children with minimal sensorineural hearing loss: prevalence, educational performance, and functional status. Ear and Hearing, 1998; 19(5) 339-354.

Centers for Disease Control and Prevention. National Center for Birth Defects and Developmental Disabilities, Early Hearing Detection and Intervention Program. http://www.cdc.gov/ncbddd/hearingloss/ehdi-programs.html

Centers for Disease Control and Prevention. National Center for Birth Defects and Developmental Disabilities, Early Hearing Detection and Intervention Program. What is EHDI? http://www.cdc.gov/ncbddd/ehdi/ehdi.htm.

Elssmann, S.A., Matkin, N.D. and Sabo, M.P. Early identification of congenital sensorineural hearing impairment. The Hearing Journal. 1987; 40(9):13-17.

Flexer, C. Facilitating hearing and listening in young children. San Diego, CA: Singular; 1994.

Gallaudet Research Institute. Stanford Achievement Test, 9th Edition, Form S, Norms Booklet for Deaf and Hard of Hearing Students; Washington, DC: Gallaudet University; 1996, http://gri.gallaudet.edu/Literacy.

Grosse, S. Cost comparison of screening newborns for hearing impairment and biochemical disorders. Centers for Disease Control and Prevention. Paper presented at the Newborn Screening and Genetics Conference, May 2001.

Harrison, M and Roush, J. Age of suspicion, identification and intervention for infants and young children with hearing loss: a national study. Ear and Hearing. 1996; 17:55-62.

Healthy People 2010: Volume II (second edition), http://www.health.gov/healthypeople/document/html/objectives/28-11.htm.

Johnson, J.L., Mauk, G.W., Takekawa, K.M., Simon, P.R., Sia, C.C.J. and Blackwell, P.M. Implementing a statewide system of services for infants and toddlers with hearing disabilities. Seminars in Hearing. 1993; 14:105-119.

Joint Committee on Infant Hearing. Year 2000 position statement: principles and guidelines for early hearing detection and intervention programs. American Journal of Audiology. 2000; 9:9-29. http://www.jcih.org/

National Center on Hearing Assessment and Management. http://www.infanthearing.org/

National Institutes of Health. Early identification of hearing impairment in infants and younger children. National Institutes of Health, Rockville, MD; 1993.

Newborn hearing screening: recommendations and rationale. U.S. Preventive Services Task Force, Agency for Healthcare Research and Quality, Rockville, MD; 2001 http://www.ahrq.gov/clinic/3rduspstf/newhearrr.htm.

Oyler, R., Oyler, A. and Matkin, N. Unilateral hearing loss: demographics and educational impact. Language, Speech and Hearing Services in Schools; 1988; 19:201-209.

Quigley, S. Effect of hearing impairment in normal language development. Pediatric Audiology, Englewood Cliffs, NJ: Prentice-Hall; 1978.

Ross, M. Performance of hard of hearing children _ academic achievement. Our Forgotten Children - Hard of Hearing Pupils in the Schools, Third edition; Bethesda, MD, Self Help for Hard of Hearing People; 2001; 28-30.

Yoshinaga-Itano, C. and Apuzzo M.L. Identification of hearing loss after 18 months of age is not early enough. American Annuals of the Deaf. 1998; 143(5):380-387.

Yoshinaga-Itano, C., Sedey, A.L., Coulter, B.A. and Mehl, A.L. Language of early and later-identified children with hearing loss. Pediatrics. 1998; 102:1168-1171.

By Gigi Newton, INSITE Specialist and Kate Moss, Family Specialist, TSBVI, Texas Deafblind Outreach

Originally published in Summer 2001 edition of See/Hear Newsletter

Importance of vision and hearing to development and learning

Although every one of our senses plays a role in early development, vision and hearing certainly seem to lead the way. Much of early parent/child bonding has to do with the child's ability to make eye contact and sustain a gaze with his parents, respond to their voices by gurgling and cooing, and to be comforted by the sight and sound of them. Much of the reason an infant tries to move is because he sees or hears something that intrigues him. He learns that things and people exist in the world primarily because he sees and hears them come and go. He visually tracks an object he pitches to the ground or hears it hit the floor. That tells him the object still exists, even though it is not in his hands any longer. When she cries she can hear Daddy calling to her or see Momma walk into the room. She can inspire her parents to linger and play with her by cooing and making eye contact, the earliest form of conversation. He learns about size, shape, color, functions of objects, social interactions, and so much more just by listening and looking at the world at work. Early development has critical links to a child having full use of his/her vision and hearing. When these senses don't work perfectly or not very well, everything is impacted.

It's hard to tell a parent there may be vision and hearing issues

Professionals working with infants and families may have a hard time suggesting that there is a problem with a child's vision or hearing. This is especially true when the family is already dealing with their child's other medical or disability issues. After all, a family can only deal with so much at one time. Because infants are much harder to test for vision and hearing loss, many mild impairments (or sometimes even major impairments) may not be diagnosed quickly. Subjecting the family to another round of testing is always a hard call.

Learning about hearing and vision loss immediately is critical

As we said earlier, much of the sensory information that is vital to children's development comes through the senses of vision and hearing. During the first three years of a child's life major neural networks are being formed in the brain. Much of this development comes from distance senses, i.e., vision and hearing, which allows us to know about things and people in the world even when we are not in physical contact with them. After the first three years, development of these neural networks becomes slower. Skills that may be gained in early intervention cannot be made as quickly when the child is older.

For these and other reasons, children should be regularly checked for vision and hearing problems. We know that even mild problems with these senses can have major impact on learning. A mild hearing loss in a noisy home or daycare center can result in a child who misses critical bits of information. He may miss sounds that let him develop normal language and speech patterns. He may miss instructions his parents or babysitter gave him and appear to be misbehaving. He may become withdrawn because he is not sure what is expected of him. If he has a visual field loss he may constantly be stumbling over things. This has great impact on self-concept. A child who is sensitive to light may not enjoy or feel secure playing out of doors.

Every child, with or without a disability, should have regular and periodic vision and hearing checks. If the child is severely disabled, this can be even more important since their other senses may not be as useful in compensating for what they miss visually and auditorially. In fact, this is so important that schools complete vision and hearing screenings at regular intervals throughout the remainder of the child's educational career. These types of screenings are even more critical from birth to age three.

Parents should trust their intuition

Parents know more about their child than anyone else does. Often we meet parents who tell us that they knew something was wrong with their child's vision and hearing before any of the doctors mentioned it. In fact, many have been told that they shouldn't go looking for trouble or that their child would "grow out of it."

Parents should trust themselves when they feel there is something wrong with the way their baby uses his vision or hearing. They should feel comfortable insisting that vision and hearing are tested, especially if their child is at high risk for vision and hearing loss.

Red flags

There are many red flags associated with vision and hearing loss. Below are the syndromes, diseases and conditions, listed on the Texas Deafblind Census, that put a child at high risk for deafblindness. Children with these etiologies should be watched closely for vision and hearing problems.

Syndromes, Diseases and Conditions

Pre-Natal/Congenital

  • Congenital Rubella
  • Congenital Syphilis
  • Congenital Toxoplasmosis
  • Cytomegalovirus
  • Fetal Alcohol Syndrome
  • Hydrocephaly
  • Maternal Drug Use
  • Microcephaly
  • Neonatal Herpes Simplex

Post-Natal/Non-Congenital

  • Asphyxia
  • Direct Trauma to the Eye and/or Ear
  • Encephalitis
  • Infections
  • Meningitis
  • Severe Head Injury
  • Stroke
  • Tumors
  • Chemically Induced

Related to Prematurity

  • Complications of Prematurity

Hereditary/Chromosomal

  • Aicardi
  • Alport
  • Alstrom
  • Apert
  • Bardet-Biedl
  • Batten Disease
  • CHARGE
  • Chromosome 18, Ring 18
  • Cockayne
  • Cogan
  • Cornelia de Lange
  • Cri du Chat
  • Crigler-Najjar
  • Crouzon
  • Dandy Walker
  • Down
  • Goldenhar
  • Hand-Schuller-Christian
  • Hallgren
  • Herpes-Zoster (or Hunt)
  • Hunter (MPS II)
  • Hurler (MPS I-H)
  • Kearns-Sayre
  • Klippel-Feil Sequence
  • Klippel-Trenaunay-Weber
  • Kniest Dysplasia
  • Leber's Congenital Amaurosis
  • Leigh Disease
  • Marfan
  • Marshall
  • Maroteaux-Lamy
  • Moebius
  • Monosomy 10p
  • Morquio
  • Norrie
  • NF-Neurofibromatosis (von Recklinghausen Disease)
  • NF2-Bilateral Acoustic
  • Neurofibromatosis
  • Optico-Cochleo-Dentate
  • Degeneration
  • Pfieffer
  • Prader-Willi
  • Pierre-Robin
  • Refsum
  • Scheie (MPS I-S)
  • Smith-Lemli-Opitz
  • Stickler
  • Sturge-Weber
  • Treacher Collins
  • Trisomy 13 (Trisomy 13-15, Patau)
  • Trisomy 18 (Edwards)
  • Turner
  • Usher I
  • Usher II
  • Usher III
  • Vogt-Koyanagi-Harada
  • Waardenburg
  • Wildervanck
  • Wolf-Hirschhorn (Trisomy 4p)

Sometimes the child's etiology is unknown or the child may have only one diagnosed sensory loss. Professionals working with infants and young babies, as well as parents, should be aware of the red flags that may indicate a problem with either vision or hearing.

Hearing Loss

At Risk Factors

  • Malformation of the ear, nose, and throat
  • Rubella during pregnancy
  • Rh incompatibility
  • Family history of hearing loss
  • Apgar score from 0-3
  • Severe neonatal infections
  • Meningitis
  • Low birth weight (under 3.3 lbs.)
  • Hyperbilirubinemia
  • Ototoxic medications
  • Severe respiratory distress and/or prolonged mechanical ventilation (10 days or more)
  • Neurodegenerative disorders
  • Childhood infectious diseases such as mumps and measles

(Hearing, Speech and Deafness Center website, www.hsdc.org, June 2001)

Behavioral Indicators

  • The child does not stop moving, does not quiet in response to speech, and/or does not arouse from light sleep to sudden loud noises.
  • At about 4-7 months, the child does not turn to sounds and voices or give an indication of detecting a sound source by eyes widening or blinking, fussing or quieting, increasing or decreasing overall activity level, changes in breathing or sucking patterns.
  • There is a lack of babbling, cooing, grunting, or the child stops these behaviors and does not progress to speech.
  • The child does not respond to familiar sounds (such as mom's and dad's voices) by cooing/gurgling when he cannot see them.
  • The child does not use speech at an age when most children are beginning to use speech (approximately 9-12 months).

(SKI-HI Institute, 1998)

Vision Loss

At Risk Factors

  • Family history of vision loss (Retinoblastoma or Albinism)
  • Malformation of the ear, nose, and throat
  • Prematurity and low birth weight less than 3 lbs.
  • Birth trauma/head trauma
  • Anoxia
  • Cerebral Palsy
  • Congenital viral or bacterial infections (Rubella, CMV, Syphilis, Group B Streptococcus Infection, Toxoplasmosis, Chicken Pox, HIV)
  • Meningitis, Encephalitis, Hyperthyroidism, Microcephaly

Behavioral Indicators

  • The child does not have eyes or eyelids that look typical.
  • The child does not recognize caregivers' faces or smile in response to their smiles around the age of 3 months.
  • He does not get excited when he sees his bottle or other familiar objects he likes.
  • At 4-6 months, the child's eyes do not seem to move together when following an object or person.
  • The child may turn or tilt his head in unusual positions when looking at an object.
  • The child may hold an object very close to his eyes.
  • The child may over-reach or under-reach for objects (accurate reaching usually occurs around 6 months).

What do you do?

If there is a concern about vision or hearing, your ECI program should make a referral to the appropriate medical professional. We would like to encourage ECI personnel to work closely with their Teacher of the Visually Impaired, Teacher of the Deaf and Hearing Impaired, and/or TCB Children's Caseworkers in helping the families prepare for the doctor visits. These professionals have much to offer to the process. They can usually share the names of doctors, audiologists, and vision specialists who have more experience working with disabled children. Often they can guide the ECI professional and parents in compiling a list of concerns related to the way the child uses his vision and hearing. More importantly, they can provide parents with information about the types of testing that may be done and how to help prepare the child for testing. This level of support can be provided before an actual vision or hearing referral has been made.

Parents and professionals must keep a close watch on a child's progress related to vision and hearing. Hearing and vision issues must not be ignored, especially if the child has other disabilities. When a problem is suspected, no time should be lost in following up on the concern. We owe it to our children not to lose that critical window of time between birth and age three. When early intervention can make such major differences in life-long functioning, they can't afford to wait.

References and Resources

  • Hearing, Speech and Deafness Center website, www.hsdc.org, June 2001. Early identification of hearing loss. From Communication Update, published on HSDC Website, copyright 1996-99.
  • Moss, Kate. Syndromes which often result in combined vision and hearing loss. Texas School for the Blind and Visually Impaired website, http://www.tsbvi.edu/Outreach/seehear/archive/syndromes.html, 2001.
  • SKI-HI Institute, 1998. Auditory development. Understanding Deafblindness: Issues, Perspectives, and Strategies. SKI-HI, Utah State University, Logan, Utah, p. 21.
  • Texas School for the Blind and Visually Impaired website, www.tsbvi.edu/Education/db-etiology.htm, June 2001. Primary identified etiology - deafblind.

Originally published in the Summer 2009 edition of Texas SenseAbilities
Versión Español de este artículo (Spanish Version)

Jeri Cleveland and Debra Sewell, Curriculum Department, Texas School for the Blind and Visually Impaired

Abstract: The authors discuss the importance of fine and gross motor development for children with visual impairments. The importance of learning based on hands-on experiences is also discussed.

Keywords: , blind children, early development, motor skills

For many of our students, both blind and low vision, tactile learning is their “pathway to progress.” Parents and TVIs light that path by bringing the world to children and showing others how to do it as well. Visual impairment affects the whole process of information gathering. Far too often we expect blind or visually impaired children to base their knowledge of the world on verbal descriptions and very limited “hands-on” experiences. This cannot compare to the almost constant kaleidoscope of incidental information that fully sighted children have taken in before they go to school. Although we typically think of only blind children as needing tactual skills instruction, low vision students might also be missing crucial information that will affect concept development and functioning abilities.

Research suggests that when sensory input, including tactile input, is imbedded within a purposeful activity, it is meaningful to the central nervous system and can promote learning. Young blind children need families and professionals to provide intense stimulation, motivation and movement. If these children do not become actively engaged in experiences and exploration at an early age, their approach to gathering information is passive and they cannot fully develop their sense of touch. Children with visual impairment must learn to be active seekers of information about their world. This is necessary to gain the essential background knowledge they need to have before they start to school. In the best of all worlds, development of motor, tactile, and visual skills, language acquisition, and concept development happen at the same time through meaningful infant and early childhood experiences.

Real hands-on, do-it-myself experiences are the place to start. Experiences need to be interactive, not all adult-directed. The child must be actively engaged, and he must initiate some of the movement in order to learn from an experience. It takes many experiences of a similar type to develop one concept.

Providing experiences does not have to be an elaborate, planned event. Simply involve the child in everyday activities. For example, when dressing, allow him to hold the shirt, and help him explore the fabric, the neck, the buttons, the sleeve, the front and the back, while describing and labeling the parts you are touching together. Although this takes a little more time in the dressing routine, your child is gaining invaluable information, concepts, and skills.

Experiences build concepts. A concept is a mental representation, image or idea of tangible and concrete objects (e.g., a chair, a dog); and intangible ideas and feelings (e.g., colors, emotions). Concept development involves more than spatial relationships. It is linking the tactual interpretation of parts to build an entire perception of the whole, and having enough meaningful experiences to find patterns, and make connections and generalizations (tall-ness, hour-ness, dog-ness). We see many different kinds of spoons so we develop the generalized concept of what a spoon is. Therefore a spoon is more than just the baby spoon the child eats with.

In order to be meaningful, language must be based on real knowledge and experiences in labeling, describing, expressing feelings, etc. The overemphasis of oral language without the experiences of moving, touching and doing often results in the use of “empty language.” Empty language occurs when the student uses language for which he has no real understanding. We must help our children use the descriptive words that label the sensations and objects they are seeing or touching or tasting or doing, while they are seeing, touching, tasting or doing them. Start this process early by pairing descriptive language within daily routines even before your child can talk.

Get that baby moving! Remember tactile skills development is dependent on the development of both gross and fine motor skills. Large muscles develop first. Babies need to kick their legs, wave their arms, roll over, creep, and crawl. Fully sighted children are motivated to move by the desire to reach the people and objects they can see. We must provide sensory input that lets visually impaired babies know there are things in their world they want to touch, hold, feel, or taste. Gross motor skills are the foundation for fine motor development. As soon as a child has some control over his large muscles, challenge him to move to the next step by providing him with fun things to do—toys to hold, buttons to push, wheels to turn, and spoons to bang on the table and eat with.

Everyday experiences help develop the skills children need to be efficient tactual learners. They need strong hands and fingers for grasping, squeezing, pinching, and holding. They also need flexibility, dexterity and control which would include movements such as turning wrists, isolating finger movements, and using light touch. Gross and fine motor skills are built upon, improved, and better controlled throughout the years of early childhood. Muscle memory is the ability of the brain to move muscles automatically without conscious effort. It is built over time through repetition of a given set of motor skills. For example, a baby must pull himself up and creep around furniture many, many times before the “step movements” become automatic.

Tactual learning is not the same as visual learning, and it necessitates a lot more touching than we are typically used to. Tactual learning requires that information be gained by exploration of one aspect of an object at a time, and piecing it together to make the whole. It requires immediate proximity and multiple opportunities to explore. Tactual learning simply takes more time. Before children know they can reach out and touch things, the adults have to intentionally set up opportunities for tactile interaction. This needs to start in infancy by increasing movement, interaction, stimulation and access to interesting, and motivating people and objects.

Barraga and Erin (1992) described five levels of tactual learning: awareness and attention; structure and shape; part-towhole relationships; graphic representations; and Braille symbols. Listed below are activity ideas for the first three levels.

Activities: Awareness and Attention

  • Touching an infant’s cheek with the nipple of a bottle to encourage the child to seek it with his mouth  Offering fingers or objects for the child to hold
  • Playing with toys that vibrate, move or make noises
  • Brushing teeth with vibrating toothbrush
  • Playing in water (bath-time), sand, dry beans/rice
  • Playing with clay or playdoh
  • Finger painting with media of various consistencies
  • Taking interactive Discovery Walk outdoors

Activities: Structure and Shape

  • Sorting objects by size and shape
  • Making size comparisons
  • Identifying various sizes of objects
  • Identifying various shapes
  • Identifying structural features such wheels, arms, hollow vs. solid, rigid vs. flexible

Activities: Part to Whole Relationships

  • Using blocks or other building toys
  • Putting lids on pans or jars
  • Putting keys in locks
  • Using dials on stoves, washing machines, etc.
  • Discovering pages in books
  • Making sandwiches

Motor Activities to Encourage Pre-Braille Skills

Listed below, developed by Debra Sewell and Chris Strickling, (1997, 2004), are suggested activities to facilitate early fine motor development.

Grasp

Palmar

  • squeezing toys
  • squeezing playdough/clay
  • squeezing sponges or a baster
  • taking objects out of containers
  • drawing
  • picking up jacks
  • sanding
  • using a cookie cutter
  • using a hole puncher
  • putting pop beads together
  • eating finger foods

With thumb and fingers

  • stringing beads
  • holding paper for cutting
  • using crayons/pencil/paintbrush
  • using glue sticks for art projects
  • pinching playdough/clay
  • using pegboards
  • building towers with blocks
  • picking up jacks
  • painting with paintbrush
  • turning pages of a book
  • picking up small beads/objects with tweezers
  • paper weaving
  • putting shapes into a shape sorter
  • sorting paper clips, red hots, goldfish crackers
  •   buttoning, zipping and snapping - on own body

Pincer

  • popping bubble wrap
  • picking up small objects
  • tying bows
  • using pushpins
  • sewing cards
  • stringing beads
  • putting pegs in pegboards
  • using geoboards
  • putting clothespins on edges of cans or jars
  • using an eyedropper
  • turning knobs on a wind-up toy
  • putting coins through a small slot
  • picking up individual candies

Release

  • giving an object on request
  • stacking activities - cans, blocks, nesting cups
  • sorting activities
  • placing objects in containers
  • using the release that is necessary to complete the activities in the “grasp” section

Rotary Motion (takes place from wrist with stable arm)

  • assembling nuts and bolts
  • using twist ties
  • turning volume knobs on radio & TV
  • manipulating lids on and off of jars/ tubes
  • mixing food in bowl
  • turning knobs on water fountains or sinks
  •   using wind-up toys, busy boxes, music boxes
  • turning doorknobs
  • scooping sand, gravel, dried beans
  • finger painting
  • finding objects hidden in sand, dried beans
  •   unwrapping individually wrapped candy
  •   pouring from one container to another

Finger Isolation

  • making fingerprints in playdough/clay
  • pushing objects into playdough
  • finger painting with specified fingers
  • pushing buttons on tape recorder
  • pushing buttons on blender and other appliances
  • playing musical instruments
  • turning dial/pushing buttons on toy phone
  • moving coins/poker chips placed under fingers
  • tracing around stencils with fingertip

Bilateral Hand Use

Almost all of these activities involve stabilizing with one hand and manipulating with the other hand, which is hard for VI kids.

  • stringing beads
  • pulling tape off roll
  • tearing paper
  • twisting lids on and off
  • cutting paper
  • using a hole puncher
  • sanding
  • using a ruler to make lines
  • holding container with one hand while placing object in with other
  • stabilizing toy with one hand while using other to play with toy
  • pushing together and pulling apart pop-beads
  • finger painting
  • rolling “snakes” and “balls” with playdough/clay
  • attaching paper clips to paper
  • tracing around an object/stencil
  • holding paper with one hand and stapling with other
  • stabilizing bowl while stirring, scooping or pouring
  • unwrapping individually wrapped candy

Hand and Finger Strength

  • crumpling paper
  • placing clothespins on edges of cans or jars
  • stretching rubber bands
  • manipulating playdough
  • squeezing glue bottles
  • using stapler held in hand
  • using stapler by pushing
  • using rolling pin
  • using a hole puncher
  • hammering
  • pushing together and pulling apart pop-beads
  • pushing together and pulling apart bristle blocks
  • squeezing nerf balls
  • sponge painting
  • popping bubble wrap
  • pushing pins into corkboard
  • wall push-ups

References

Barraga, N. C. (1976). Visual handicaps and learning: A developmental approach. Belmont, CA: Wadsworth. Barraga, N. C., & Erin, J. (1992). Visual Handicaps & Learning, 3rd Edition. Austin, TX: Pro-Ed.

Sewell, D., & Strickling, C. (2004). “Motor Activities to Encourage Pre-Braille Skills.” From TSBVI .

Movement in space provides infants with Stimulation. Movement promotes increased interaction with and understanding of their environment. Physical movement promotes interactions with others and with their environment, as well as intrinsic pleasure. Children with visual impairment may need extra guidance to promote coordinated and fluid movements, as they often lack the appropriate motivation to move and to explore.

Many things affect movement:

primitive reflexes 
(automatic reactions to external stimuli)
posture 
(body alignment that promotes optimal movement)
tone 
(muscles that are in a balanced resting state of tension)
balance 
(adjusting position when the body's center of gravity is not within the base of support)
strength 
(muscle power to perform activity and maintain stability)
advanced reflex reactions
(automatic postural adjustments and righting movements) 
rotational skills 
(moving one portion of the trunk while keeping the rest stationary) coordination 
(smooth transitions from one position to another)
sensory integration
(organizing input from various sensory systems before making a response)
motor planning 
(logically carrying out a sequence of actions resulting in the successful completion of a motor task)
locomotion 
(moving from place to place independently)
conceptual understanding 
(understanding of body parts, body position in space objects, and objects in space).

Concerns for Children with Visual Impairment

  • Vision is a strong motivator for infants to lift their heads and go after' something they see. Children with VI will need extra encouragement to move and explore.
  • Infants with VI often dislike the prone (on their tummy) position. Prone positioning and the rotational movements into and out of prone (and into and out of hands-knees) are important for building strength and stability. Therefore, it is important that infants experience the prone position (tummy time') in positive ways from early infancy.
  • All children, but esp. children with VI learn through experiences. Provide lots of movement experiences. Do activities with your child, not to your child. Provide a large variety of these experiences. Include crawling through tunnels and onto couches, stepping in and out of boxes or buckets, crawling or walking on uneven surfaces. Help them see' their changing and varied environment.
  • Attach language to motor play. When crawling up (or down) on the couch, say "we're going up," "we're going down."
  • Provide REAL objects when talking about them (give him a real orange to play with, not a plastic one)
  • Children learn many motor skills by imitating others. Children with VI do not have this opportunity to observe and imitate. They will need to be taken through new experiences in a hand-over-hand fashion.
  • Lack of vision may lead to reduced interest in repetitive motor play. Attaching bracelets with bells to wrists or ankles can provide additional interesting stimuli for the infant.
  • Children need predictability in their surroundings. Items in their environment should be kept constant, and children should be encouraged to learn where things are located. Children should never be picked up and carried and placed in new surroundings, they should assisted in moving into a new area, so they can understand how the new area is set up. If they learn to be confident in familiar areas, they will be more secure in unfamiliar environments.
  • Children with VI are lacking the ability of "seeing" anticipatory cues in their environment. It is important to give them cues before moving them, placing something in their hands, or when feeding them. These cues can be verbal or tactual.
  • Play all the singsong handclap games with your child. This type of fun, movement, game is important for learning concepts of where is a head, shoulders, knees, toes (song); hands clap together (patty-cake); objects are permanent (peek-a-boo). They also encourage sitting balance as they are using their hands for play, not for balance propping. They also encourage using hands together, and reaching.

Developmental Sequence

  • Lift head while lying on their belly (prone) by 3 months
  • Sit with support by 6 months
  • Play with feet by 6 months
  • Roll over by 6-8 months
  • Sit without support by 8 months
  • Start trying to crawl by 8 months
  • Reach in all directions from sitting without falling over by 9 months
  • Pull to standing by 9-12 months
  • Walk alone by 12-18 months
  • Crawl upstairs by 12 months
  • Kneel alone by 15 months
  • Crawl (backwards) downstairs by 18 months
  • Run well by 2 years
  • Squat to play by 2 years
  • Kick a ball by 3 years

Taken from:

Sensory Motor Activities for Early Development by Hong, Gabriel, & St. John, l996

Developmental Guidelines for Infants w/ Visual Impairments by Lueck, Chen, & Kekelis, l997

Mary T. Morse, Ph.D., Special Education Consultant, Pembroke, New Hampshire

Originally reprinted in the Winter 2000 edition of See/Hear newsletter with permission from the Cornelia de Lange Foundation, Inc.

 

Editor's note: Recently I visited the Cornelia de Lange Foundation, Inc. website in search of information for a classroom teacher. I came across this wonderful article, one of the many interesting things available at this site. I would encourage families and professionals who want to learn more about CdLS to visit this site if they haven't discovered it already. There web address is <http://cdlsoutreach.org>. My thanks to CdLS Foundation for giving their permission to reprint this article for our readers.

Cornelia de Lange Syndrome (CdLS) has great variability in its manifestation, from those individuals who are visually recognizable as having CdLS to those who, to the uninitiated observer, display no unusual physical and/or behavioral characteristics. A common characteristic, however, is that numerous infants, preschool and school-age children with CdLS have a range of significant medical and health issues that consume parental physical, emotional and financial energy and the attention of numerous professional disciplines. Many children diagnosed with CdLS also present another set of concerns, namely in the area of communication and behavior. Planning and providing appropriate quality educational services for children who have CdLS must consider the influence and interplay of both sets of issues and concerns.

Education is a cultural activity with schools charged to prepare children for the life they will lead in the culture they will live. Education can be thought of as the other side of the coin from the medical and health-related issues and, as such, needs to be addressed simultaneously.

PHYSICAL, ENVIRONMENTAL, INSTRUCTIONAL & SOCIAL CONSIDERATIONS FACTORS TO CONSIDER

Factors to consider in educational planning include the child's medical and health status, stamina, ability to manage sensory-motor demands, levels of arousal, communicative status, need for structure and organization, relevant goals and objectives, motivating and understandable activities, and appropriate adaptations. Moreover, the child with CdLS needs to be an equal partner in interactive and satisfying social experiences. Social equality rests, in part, on helping ones self as much as possible, communication abilities, contributions to others, and shared experiences.

  1. 1. Medical-Health Related Issues: There is a critical need for family, medical-health personnel and school staff to communicate with each other around issues affecting health. School staff needs to be sensitive to those periods when there is a flare-up of gastro-esophageal reflux. Staff also should be informed of food allergies and strictly adhere to dietary limitations. Lastly, staff needs to distinguish between those periods of fidgeting and non-attentiveness due to discomfort and pain vs. those periods when the behaviors are due to other causes. The situation, of course, is easier to understand and manage if the student has expressive language.
  2. 2. Communication: Any discourse on education must involve the discussion of communication. We cannot transmit or receive information unless we communicate. Children with CdLS are at risk for delayed or absent speech, difficulty in understanding the subtle nuances and pragmatics of language and auditory sensitivity to a barrage of speech sounds. Speech is very difficult for many individuals with CdLS due to oral-motor apraxia. These children do not choose not to talk but find the coordination and production of the motor actions extraordinarily difficult - especially under typical school-like demand situations.
    1. While speech may be the ultimate goal for those children who currently do not talk or find talking difficult, they need a way to express themselves now so they may be more active participants in the educational process. There are a variety of educational techniques that can be employed to help these children communicate right now while they simultaneously work on the higher goals of speech production.
    2. Speech may not be a realistic goal for some children with CdLS. There are, however, a great many other educational techniques that can be employed for very effective communication. These techniques are very reliable regardless of the country, culture and/or the education program.
    3. Signing may/may not be an effective route for some children due to such receptive difficulties as (1) poor visual attention, (2) a visual handicap and/or (3) the transient/spatial/speed nature of sign. Expressive difficulties may be difficult due to factors such as (1) upper limb malformations, (2) dyspraxia (difficulty in performing smooth, rhythmical and sequential hand motions), (3) memory for motor movements and so forth.
    4. Although most children with CdLS are said to have visual-perceptual strengths, this does not necessarily mean they understand all forms of visual stimuli. Visual regard for two-dimensional representation (pictures, line drawings, photographs, print) does not automatically mean there is understanding of this form of symbolic representation. An assessment of such understanding is highly recommended.
    5. Technology provides many options for augmenting communication and has been a major boon for persons who have disabilities. However, computers and other high tech devices are not the answer for every child. There are basic skills that must be learned in order to use this technology effectively as communication and learning devises. Students need both a basic understanding of the communication process and of the concrete world of objects before they are able to manage the abstract world of symbols.
    6. In general, children who have multiple disabilities are at very high risk for missing out on numerous incidental learning experiences that typical children pick up so easily. These types of experiences center around the concrete world and bring together the visual, hearing, touch, doing foundation necessary to manage the abstract world of symbols.
  3. Vision: Myopia (near sighted), amblyopia (lazy eye affecting depth perception), chronic conjunctivitis-appearing eyes, and dry eye syndrome (making the eyes feel as if they have sand in them), photophobia (light sensitivity) and ptosis (droopy eye lids) are common visual problems. Students with these symptoms may need drops for lubricating their eyes and eye washes done in school. They also may need (1) preferential seating close to the blackboard, (2) assigned seating facing away from the windows or other sources of glare due to their light sensitivity, (3) adapted but non-glare lighting to highlight the specific work area, (4) special printed materials if vision is limited even with corrective lenses, and (5) alternating work requiring fine visual functional skills from work requiring less fine visual performance in order to reduce fatigue. Fatigue may result from the need to constantly shift head positions to accommodate to the ptosis. Teachers should know if glasses have been prescribed for the student and what is the recommended pattern for wearing them. Sometimes glasses are prescribed for specific activities. If the student has use of only one eye, it may be helpful to know if safety glasses should be worn during certain activities. Some students will have a documented visual handicap and will require the services of a trained teacher of the visually impaired.
  4. Hearing : Students may have a documented hearing loss or fluctuating hearing requiring close communication and coordination with the pediatrician and with audiologist. Such students may require use of hearing aids, A FM system and/or preferential seating near the teacher. If either hearing aids or a FM system are prescribed, staff should be aware of how to adjust the settings, how to work with the ear molds, and the best times to use the equipment. Other children with CdLS may have delayed responses to auditory stimuli which require that they be given time to process the auditory information and plan their responses. Some students will require the services of a trained teacher of the hearing impaired.
  5. Vision & Hearing: Some students with CdLS have both a vision and a hearing impairment. These students are considered deafblind and require very specialized teaching. Deafblindness is not a simple "one plus one equals two" but rather, presents significant risks in learning due to the impact of the dual sensory disability on the development of a language system. Teaching techniques oriented toward children who are visually handicapped rely on intact hearing and touch. Teaching techniques oriented toward children who are hearing impaired rely on vision. When neither sensory modality is intact or reliable, alternative communication techniques need to be utilized. Moreover, the efficiency in which a deafblind individual is able to use their residual vision and hearing is highly influenced by stress, health, medications, fatigue, background noise/visual clutter, size/distance/plane of presentation/etc. of the visual stimulus, speed of presentation, competing sensory stimuli and many, many other factors interwoven with each other. All children who have combined visual and auditory disabilities require the services of a trained teacher of the deafblind.
  6. Visual & Auditory Processing: Many children who have both visual and auditory disabilities have associated problems in processing and understanding the visual and auditory messages. Cortical visual processing problems are the biggest single cause of visual handicaps in the United States. In most of these situations, central auditory processing problems also exist. We do not, at this time, have enough data to provide information on the incidence of these cortical processing problems with individuals who have CdLS. However, prematurity, a history of difficult birth and neonatal period, and/or anoxia, place a child at risk.

A FEW STRATEGIES

  1. A well organized routine and predictable, calm, organized environments seem most conducive for students with CdLS. Schedule and calendar systems via objects, pictures, line drawings and/or words can help the student anticipate and prepare for changes in the schedule. Such schedules should be in the format the student most easily understands.
  2. Allowing time for the student to process, plan and implement a response to sensory information is essential. The number and pacing of activities may have to be individualized - especially for those students who have limited stamina, endurance and ability to control their own state of arousal. Take advantage of the visual strengths the student may have by orally giving the directions, then visually present the questions and/or demonstrate the method, and end by giving the oral directions again. Time constraints potentially may add to the stress, which, in turn, will reduce processing time further.
  3. Many of the students perform better with concrete learning experiences. For example, applying math principles by going into the community to shop for needed items involves planning, reading, mobility, safety, social etiquette and so forth.
  4. If handwriting is laborious, investigate the advantages of computer use for the student.
  5. For those students in academic programs, some may need rest breaks to reduce their level of arousal. Simultaneously, many need specific tutoring or pre-teaching, in a resource room, to deal with subjects they find difficult in the mainstream.
  6. Some of the students have a difficult time taking the initiative and making their needs known. They may find casual, recreational times with typical peers difficult because of the unpredictable nature of social events and anxiety in unfamiliar situations with unknown outcomes. To promote positive social-emotional growth in these students, determine the appropriateness of the student becoming a big sister/brother to a younger child and/or social skills training in a small group of socially-similar students.
  7. Many students with CdLS, who also have significant additional disabilities are in inclusive environments. Most often these experiences are not really social because there is very little INTERaction. However, the students profit best from such techniques as A Circle of Friends and from structured and facilitated interactions with peers.

Editor's note: Below is some additional information that is available on the CdLS website.

FAMILY ISSUES

Whether an individual is diagnosed at birth, or at age two, five or twenty, receiving a diagnosis of CdLS can be overwhelming. A lifelong process of challenging and re-challenging feelings, thoughts, actions and beliefs may begin. There will be sadness, but there will also be joy. There will also be many decisions to be made, but they do not need to be made in isolation. There are many families and professionals ready to offer information, support and encouragement to people who request it.

Families may struggle to accept the diagnosis of Cornelia de Lange Syndrome. Shock, anger, denial, guilt, and sadness are common early responses. Most families adjust to their new situation, but protracted grief or depression in a family member should be treated. In addition to the initial adjustment, intermittent stresses throughout the life of the child may temporarily destabilize a family. The primary care providers should periodically inquire about family adjustment and continue to provide emotional support for the family.

Children may qualify for special services such as CAP/MR (Community Assistance Program for the Mentally Retarded) through the division of developmental disabilities at their local mental health center. Most children should be eligible for medicaid (independent of parents' income) which provides prescription coverage as well as physical, occupational and speech therapy. In addition, respite care should be suggested in cases where the caretaking burden is high. The Association of Retarded Citizens often has a respite program and also provides support for families.

BEHAVIOR

Although many children with CdLS have no significant behavioral problems, there are some conditions, which makes self-injurious behavior more likely to occur: pain, discomfort, frustration or dismay. The typical young person with CdLS may be described as hypersensitive and dysrhythmic. He/she may be hypersensitive in that he/she may have strong reactions to ordinary stimuli and these reactions may continue long after the stimulus is gone. He/she is sometimes dysrhythmic, that is having irregular patterns of behavior in the areas of eating, sleeping and emotional response.

The lack of sensitivity to pain and/or heightened sensitivity to touch suggests some individuals may have neurological impairment. They may also be prone to behavioral problems such as hyperactivity, short attention span, and oppositional or repetitive behavior.

PSYCHIATRIC EVALUATION

Many of ordinary problems that children have can be dealt with by a pediatrician who has some developmental or behavioral experience. These would be minor problems with eating or sleeping, tantrums, or even hyperactivity. Many pediatricians are quite skilled in the first and second line drugs for impulsive and hyperactive behaviors.

Persistent behavioral difficulties including hyperactivity that does not respond to medication, severe impulsive behavior, oppositional behavior, aggression, or self injury, is the kind of treatment that will require the attention of a specialist in behavioral psychology or a child psychiatrist who has experience with the developmentally disabled. Sometimes, individuals need referral to an epilepsy specialist first, if there is suspicion of seizures. But the long-term treatment of serious behavior or emotional problems in individuals should almost always be the responsibility of a specialist in child and adolescent psychiatry, who has the appropriate background.

OPHTHALMOLOGY

All children with a new diagnosis of CdLS should be referred for ophthalmic assessment. In addition to problems which may be easily recognizable such as misaligned eyes (strabismus) or shaky eyes (nystagmus), ophthalmic examination is necessary to reveal possible nearsightedness (myopia) which might be quite severe yet otherwise go undetected. If the initial examination is normal, routine ophthalmic follow-up is usually not necessary unless new problems arise. However, it may be prudent to recheck for nearsightedness every few years until puberty.

Individuals who develop recurrent red eyes, crusting on the eyelashes, itchy eyes, tearing, or eye discharge should also see an ophthalmologist. Although the symptoms may mimic a blocked tear duct (nasolacrimal duct obstruction), they are more often due to blepharitis: an idiopathic condition in which the 20 - 30 glands normally present in each eyelid have sub-optimal flow. Rather than surgical treatment for a tear duct problem, baby shampoo eyelash scrubs can often result in dramatic improvement of the blepharitis symptoms. Older children with self-injurious behavior can seriously damage their eyeballs. Any signs of self-induced eye injury should also prompt an ophthalmic referral.

VISION

It is not unusual for children with this syndrome to be nearsighted, have recurrent red-eye, discharge or tearing or have ptosis of the eyelids. If ptosis is severe the children may lift their chins or arch their eyebrows in order to improve their vision. Many parents opt for surgery to correct the ptosis.

Many children with CdLS may not engage in normal gaze behaviors. Gaze averting may happen for a number of reasons. It may give the child time to process visual information, it may mean the child perceives the task as too difficult, or it may mean the child is feeling uncertain or stressed. Children with CdLS may also use peripheral vision more frequently than direct gazing because they have greater difficulty choosing which of the varied stimuli should receive their attention. It also tends to be true that children who are lower functioning show greater sensory rejection and sensitivity to stimulation in their environment.

HEARING

People with CdLS may have very tiny structures and testing may be difficult. It is advisable to consult an audiologist and/or otolaryngologist who is familiar with CdLS or who is experienced in working with infants. Pharyngeal-esophageal tubes may be useful for middle-ear drainage as needed but a physician experienced in working with small infants is usually necessary.

If a hearing loss is suspected, headsets and hearing aids should be prescribed for infants and children. Even a mild hearing loss can result in a speech and language delay. Smaller aids are available so it is not necessary or advisable to use an adult-sized aid. If the child will not leave on the aid, an audiologist or behavioral therapist may be helpful. Appropriate audiological management should include selection and fitting of suitable amplification for all listening environments. While the child's personal hearing aid may be sufficient some of the time, the use of FM amplification may be necessary in other situations.

Almost all children with CdLS are diagnosed with mild to moderate and sometimes severe hearing loss, however interviews with caretakers reveal unexpected reports regarding the history of audiological results. Many caretakers report that their children were diagnosed as severely hearing impaired at birth, moderately impaired at 12 months, and mildly impaired or without impairment at age 2 years. Since it is unusual for hearing to improve rather than worsen, it seems correct audiological assessment is difficult. Individuals with CdLS may have narrow ear canals and difficult behaviors, making examinations a challenge.

Parents often report their children seem to hear much better than their test results would indicate. Considerable confusion exists regarding hearing ability for some children. Many children fitted with hearing aids will not tolerate the use of them or do so only sporadically. For these individuals, retesting is often important to insure that the aid is beneficial. There have also been reports of young children fitted with adult-sized hearing aids when child-sized aids are available and more appropriate.

ORTHOPEDICS

In the more mildly affected children curving of the fifth finger (clinodactyly), small hands, a short thumb placed closer than usual to the wrist and some limitation of elbow motions are often present, with webbing of one or more fingers (syndactyly) less common. Abnormalities of the hip occur in five to ten percent of the children with CdLS and may interfere with the ability to walk. Surgery may be used to correct this condition.

Of greater relevance to communication because of the interference in the use of sign language or other augmentative strategies for communication are the more severe upper-limb malformations. In some cases, fingers, metacarpals and the long bones of the arm are absent.