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As early as 1944, researchers were examining how parents of visually impaired babies respond to the news about their child's disability. They concluded that parents needed ongoing support during the early years, as they learned to live with a visually impaired child. Al though "stages" of adjustment are often mentioned in discussions about parental reactions to having a disabled child, this philosophy implies a progression, or developing levels of feelings. This is not necessarily the case with parents of visually impaired children. There is no endpoint resolution of the problem - no "complete" time-frame. Instead of a progression of emotional stages, moving from shock towards acceptance, there is actually an ongoing mourning process, typified by both recurring bargaining ("If I just do____, everything will be okay") and depression (crying, feeling lost and alone). What is sometimes viewed as "acceptance by professionals may actually be learning to live with the hurt; "accepting " parents usually avoid comparing their visually impaired child with normally sighted peers, and are able to release themselves from guilt; they are able to place "blame" for their situation onto the real cause (e.g., disease). When parents can accept that"it's not my fault," it appears to be easier to live with the hurt. The pain never completely goes away, and surfaces at times of stress (transition periods, situations of uncertainty). When the sorrow reappears, it is hard for parents to "hear" helpful suggestions, and the wise professional waits until the crisis has passed.

Problems in parental attitude may arise if parents deny that a problem exists, or overprotect their visually impaired child (i.e., do not allow him/her to achieve independence appropriate to his/her age). Denial closes off parents from positive suggestions, and may interfere with intervention strategies. Over protectiveness insulates the visually impaired child from the very world he/she needs to discover on his/her own. There is no clear method of helping parents to resolve these problems. Ongoing support (a strong shoulder and a ready ear) may be the best that the professional can offer; teachers should not attempt to provide "therapy" for parents, since more harm than good can be done by even the most well-intentioned educator who has had no training in counseling (and most have not). If severe emotional problems seem to exist (e.g., the family seems to be in danger of "falling apart"), professional help (and, possibly, respite care) should be recommended.

Socioeconomic status seems to be a factor in parental reactions to having a visually impaired child. As the socioeconomic situation improves (e.g. , there is at least one wage earner in the family, and the bills get paid), the ability to deal with the stress also seems to improve. Conversely, if there are few resources to address the basic needs of food, shelter, clothing, and medical care, the ability of parents to manage their emotional reactions to a visually impaired child may be stretched to the breaking point. Financial assistance can go a long way towards balancing the emotional levels of the family.

It is important to the visually impaired child that he/she feel "accepted" within the family. Being treated "like the other kids" can help build this feeling of security. The child's self-image and self-esteem are closely related to how he/she perceives his/her value within the family. Nurturing parents, regardless of socioeconomic status, are good for all children, but crucial to visually impaired children. Pride in the child's achievements, no matter how small , and praise for effort, can build a sense of accomplishment: "I did it myself!" Since services for visually impaired children in the B-3 year old range focus on the family (the child i in the family), every effort should be made to assess each family's specific and unique needs. Because timing for intervention is so critical for visually impaired children in this age group, the VI teacher should be an active member of the IFSP team, to provide both strategies and suggestions for cooperative service provision. This is especially critical in the early years, when parent - child bonding is taking place. Blindness or visual impairments can interfere with the bonding process (the child may not make eye contact, may startle when touched, or may turn his/her head away). Moreover, the child with early medical problems may have had either extended hospital time, with separation from caregivers, or have had uncomfortable experiences with physical contact (shots, intensive care procedures, etc.). These children may require special handling (soothing, calming, stroking), and their parents/caregivers may need extra support and counseling. On-going family support can help resolve miscommunication issues, and ensure the necessary bonding between child and parents.

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Next Section of Infants and Toddlers with Visual Impairments by Virginia Bishop

On December 19th, 2014 the President signed into law the Achieving a Better Life Experience (ABLE) Act, aimed at reducing financial burdens for people with disabilities and their families by providing them access to tax-saving 529 Education Savings Plans, called 529-ABLE Accounts.

While there will be a delay while each state sets up and begins to operate these accounts, the passage of the Act means that soon people with disabilities and their families will be able to set aside funds (up to $14,000 per year) for disability-related expenses to supplement insurance and other benefits. Importantly, money set aside in these funds, up to $100,000, will be excluded from the income and assets calculations which are used to determine eligibility for federal benefits such as SSI. Also, Medicaid benefits eligibility will not be impacted by funds saved in an ABLE account. States will have to determine asset/income eligibility with respect to ABLE Accounts for other state benefits which do not include federal funds.

Eligible individuals must have a condition that occurred before age 26. We strongly encourage people who are blind/visually impaired and families of children who are blind/visually impaired to consult their tax advisers about the financial planning benefits and implications of the ABLE Act and 529-ABLE Accounts.

Stay tuned to AFB's Policy Center and FamilyConnect for future updates on this and other important topics for families!

Read the text of the ABLE Act.

Questions? Email Rebecca Sheffield, Senior Policy Researcher, at

To subscribe or to find out what other newsletters are available from AFB, visit http://www.afb.org/myafbnewsletter.aspx.

by Millie Smith and Stacy Shafer

Student's Name: Catherine
Date of Assessment: 3/5/95

Name(s) of Assessor(s): M. Smith, P. Castro (mother), N. Jones

Assessment Period
School day starts at: 8:15 a.m
School Day ends at: 3:30 p.m.

Nonschool environments:
Place: Home From: 4:00 p.m. To: 8:30 p.m.
Place:           From:                   To:

The total assessment period should be at least one school day. Assessment of the student in nonschool environments on the same day would be extremely helpful.

Recording Schedule

Indicate the length of the interval between recordings in Part II. Intervals should be no shorter than one minute and no longer than 15 minutes. The intervals should be consistent throughout the assessment period. Part II information will be recorded every 15 minutes.

Part I

Provide the information called for in the grids for the 24 hours preceding the beginning of the assessment and throughout the assessment period. Under "Comment" indicate any significant factor that comes to mind and be sure to note when the recorded information is a departure from the student's typical routine. If there are significant departures or if the student is ill on the day of assessment, postpone the assessment.

Note: This is an informal teacher-made assessment based on the Carolina Record of Individual Behavior (CRIB), by R. J. Simeonsson et al. and the Project ABLE Manual: Analyzing Behavior State and Learning Environments Profile by B. Guy et al.

Food and Liquid Information

Each time the student eats something, drinks something, or is tube fed, enter the following information on the grid:
(the table has five columns titled Type, Start Time, Stop Time, Amount, and Comment)

Food and Liquid Information
TypeTime StartTime StopAmountComment
Ensure. 8:20 8:40 16 oz  
Water. 8:40 8:45 6 oz  
Ensure 12:30 1:20 16 oz.  
Water 1:10 1:15 6 oz.  
Ensure 4:30 4:50 16 oz.  
Water 4:50 5:00 6 oz.  
Ensure 8:00 8:20 16 oz.  
Water. 8:20 8:25 6 oz  

Medication Information

Each time the student takes a prescription or over the counter medication enter the following information on the grid:

Medication Information
TypeTimeAmountComment
Tegretol Suspension 8:20 a.m. 200 mg  
Dimetap Elixir 8:20 a.m. 10 cc for congestion
Dimetap Elixir 12:30 p.m. 10 cc  
Tegretol Suspension 4:30 p.m. 200 mg  
Dimetap Elixir 4:30 p.m. 10 cc  

Seizure Information

Each time a seizure occurs, enter the following information on the grid:

Medication Information
Start Time Stop TimeDescriptionComment
       
    none observed  
       
       
       

Sleep Information

Each time the student sleeps for more than five minutes, enter the following information on the grid. If the student's sleep is interrupted for longer than three minutes, enter a stop time and begin a new sleep episode on the next line:

Sleep Information
Start TimeStop TimeLocationComments
9:00 p.m. 12:00 p.m. Bedroom Cried to request in bed change in position
12:15 p.m. 3:20 p.m. " "
3:28 p.m. 6:15 p.m.. " Playing quietly in bed when checked at 6:15

Part II - Instructions

Time: Record the clock time for every third interval recorded. This will help show the continuity of the assessment.

State: Record the state at the moment of observation, not the prevalent state for the entire interval.

Position: Indicate the position the student is in at the moment of observation (e.g., sitting, side-lying, prone, supine, standing).

Specific External Stimuli Available: Describe the specific external stimuli available to the student at the moment of observation (e.g., music, vibrator, swing, water, food, Little Room, mobile). If no material is available, enter a zero.

Ambient Conditions: Describe the characteristics of the surrounding (e.g., room temperature, noise level, conspicuous smells, lighting) for the first state recorded and whenever conditions change. When no change occurs, put ditto marks in the column.

Social Conditions: Record the name of the person interacting with the student at the moment of observation. The person must be talking to the student, touching the student, and/or co-actively manipulating an object with the student. The passive presence of another person should not be recorded. If no person is interacting with the student, enter zero.

Key to Part II Assessment

State Key: _ = Seizure; S = Sleep; D = Drowsiness; QA = Quiet Awake; AA = Active Awake; FA = Fussy Awake; MA = Mild Agitation; UA = Uncontrollable Agitation.

TimeActivityStatePosition Spec. Ext. Stimuli Avai.lAmbient ConditionsSocial Conditions
8:15 Arrival QA Seated 0 Outdoors cold, windy, noisy chairlift in bus Greeted by TA  Linda
8:30 Breakfast D Supine 0 Normal temperature and lighting 0
8:45 Tooth-brushing MA Seated Toothbrush, toothpaste, water, towel Noisy bathroom,very bright lighting Hand-over-hand   manipulation; L
9:00 Hair Drying QA Seated Hairdryer, mousse, brush Normal temperature and lighting Talking; Linda
9:15 Hair Brushing QA Seated Hairdryer, mousse, brush Normal temperature and lighting Talking; Linda
9:30 Drama Class AA Seated Papier mache material Dark stage area, echoes Surrounded by peers
10:00 Changing AA Supine Cold wipes, talcum  powder Normal temperature  and lighting Patting, talking; Linda
10:15 Mail Delivery AA Rolling  prone stander Variety visual & auditory stimuli avail. Many changes; different noise levels Interaction with 6 different adults
        Remainder of day not shown    

Part III - Summary

Typical duration of alert states: 15 to 20 minutes

(Note: If the student is typically alert less than one minute, a different type of biobehavioral assessment will be necessary. Consider assessing one activity at 30 second intervals. The purpose of this assessment would be to try to determine what influences cause state changes and to provide modifications associated with changes to more alert states.)

Positions during alert states: Seated, standing (in prone stander)

Specific external stimuli available during alert states: Movement; tactual materials (e.g., paper, hairbrush); auditory, especially human voice

Ambient conditions during alert states: Normal lighting, temperature, low noise level

Social conditions during alert states: Talking and touching

Less than alert states typically occurred when: There was no social interaction

Agitated states typically occurred when: There was too much noise or strong smells and just before feeding

If you have concerns about food and liquid intake or medications, talk with parents and other team members about getting more information.

Do you have concerns about food and liquid intake being adequate for maintenance of alert states:

___X__ Yes  ______ No

Do you have concerns about medication and/or medication schedules facilitating alert states at optimum programming times:

___X___Yes   _____  No

 

by Millie Smith and Stacy Shafer

Student's Name: Catherine
Date of Assessment: 3/5/95

Name(s) of Assessor(s): M. Smith, P. Castro (mother), N. Jones

Assessment Period
School day starts at: 8:15 a.m
School Day ends at: 3:30 p.m.

Nonschool environments:
Place: Home From: 4:00 p.m. To: 8:30 p.m.
Place:           From:                   To:

The total assessment period should be at least one school day. Assessment of the student in nonschool environments on the same day would be extremely helpful.

Recording Schedule

Indicate the length of the interval between recordings in Part II. Intervals should be no shorter than one minute and no longer than 15 minutes. The intervals should be consistent throughout the assessment period. Part II information will be recorded every 15 minutes.

Part I

Provide the information called for in the grids for the 24 hours preceding the beginning of the assessment and throughout the assessment period. Under "Comment" indicate any significant factor that comes to mind and be sure to note when the recorded information is a departure from the student's typical routine. If there are significant departures or if the student is ill on the day of assessment, postpone the assessment.

Note: This is an informal teacher-made assessment based on the Carolina Record of Individual Behavior (CRIB), by R. J. Simeonsson et al. and the Project ABLE Manual: Analyzing Behavior State and Learning Environments Profile by B. Guy et al.

Food and Liquid Information

Each time the student eats something, drinks something, or is tube fed, enter the following information on the grid:
(the table has five columns titled Type, Start Time, Stop Time, Amount, and Comment)

Food and Liquid Information
TypeTime StartTime StopAmountComment
Ensure. 8:20 8:40 16 oz  
Water. 8:40 8:45 6 oz  
Ensure 12:30 1:20 16 oz.  
Water 1:10 1:15 6 oz.  
Ensure 4:30 4:50 16 oz.  
Water 4:50 5:00 6 oz.  
Ensure 8:00 8:20 16 oz.  
Water. 8:20 8:25 6 oz  

Medication Information

Each time the student takes a prescription or over the counter medication enter the following information on the grid:

Medication Information
TypeTimeAmountComment
Tegretol Suspension 8:20 a.m. 200 mg  
Dimetap Elixir 8:20 a.m. 10 cc for congestion
Dimetap Elixir 12:30 p.m. 10 cc  
Tegretol Suspension 4:30 p.m. 200 mg  
Dimetap Elixir 4:30 p.m. 10 cc  

Seizure Information

Each time a seizure occurs, enter the following information on the grid:

Medication Information
Start Time Stop TimeDescriptionComment
       
    none observed  
       
       
       

Sleep Information

Each time the student sleeps for more than five minutes, enter the following information on the grid. If the student's sleep is interrupted for longer than three minutes, enter a stop time and begin a new sleep episode on the next line:

Sleep Information
Start TimeStop TimeLocationComments
9:00 p.m. 12:00 p.m. Bedroom Cried to request in bed change in position
12:15 p.m. 3:20 p.m. " "
3:28 p.m. 6:15 p.m.. " Playing quietly in bed when checked at 6:15

Part II - Instructions

Time: Record the clock time for every third interval recorded. This will help show the continuity of the assessment.

State: Record the state at the moment of observation, not the prevalent state for the entire interval.

Position: Indicate the position the student is in at the moment of observation (e.g., sitting, side-lying, prone, supine, standing).

Specific External Stimuli Available: Describe the specific external stimuli available to the student at the moment of observation (e.g., music, vibrator, swing, water, food, Little Room, mobile). If no material is available, enter a zero.

Ambient Conditions: Describe the characteristics of the surrounding (e.g., room temperature, noise level, conspicuous smells, lighting) for the first state recorded and whenever conditions change. When no change occurs, put ditto marks in the column.

Social Conditions: Record the name of the person interacting with the student at the moment of observation. The person must be talking to the student, touching the student, and/or co-actively manipulating an object with the student. The passive presence of another person should not be recorded. If no person is interacting with the student, enter zero.

Key to Part II Assessment

State Key: _ = Seizure; S = Sleep; D = Drowsiness; QA = Quiet Awake; AA = Active Awake; FA = Fussy Awake; MA = Mild Agitation; UA = Uncontrollable Agitation.

TimeActivityStatePosition Spec. Ext. Stimuli Avai.lAmbient ConditionsSocial Conditions
8:15 Arrival QA Seated 0 Outdoors cold, windy, noisy chairlift in bus Greeted by TA  Linda
8:30 Breakfast D Supine 0 Normal temperature and lighting 0
8:45 Tooth-brushing MA Seated Toothbrush, toothpaste, water, towel Noisy bathroom,very bright lighting Hand-over-hand   manipulation; L
9:00 Hair Drying QA Seated Hairdryer, mousse, brush Normal temperature and lighting Talking; Linda
9:15 Hair Brushing QA Seated Hairdryer, mousse, brush Normal temperature and lighting Talking; Linda
9:30 Drama Class AA Seated Papier mache material Dark stage area, echoes Surrounded by peers
10:00 Changing AA Supine Cold wipes, talcum  powder Normal temperature  and lighting Patting, talking; Linda
10:15 Mail Delivery AA Rolling  prone stander Variety visual & auditory stimuli avail. Many changes; different noise levels Interaction with 6 different adults
        Remainder of day not shown    

Part III - Summary

Typical duration of alert states: 15 to 20 minutes

(Note: If the student is typically alert less than one minute, a different type of biobehavioral assessment will be necessary. Consider assessing one activity at 30 second intervals. The purpose of this assessment would be to try to determine what influences cause state changes and to provide modifications associated with changes to more alert states.)

Positions during alert states: Seated, standing (in prone stander)

Specific external stimuli available during alert states: Movement; tactual materials (e.g., paper, hairbrush); auditory, especially human voice

Ambient conditions during alert states: Normal lighting, temperature, low noise level

Social conditions during alert states: Talking and touching

Less than alert states typically occurred when: There was no social interaction

Agitated states typically occurred when: There was too much noise or strong smells and just before feeding

If you have concerns about food and liquid intake or medications, talk with parents and other team members about getting more information.

Do you have concerns about food and liquid intake being adequate for maintenance of alert states:

___X__ Yes  ______ No

Do you have concerns about medication and/or medication schedules facilitating alert states at optimum programming times:

___X___Yes   _____  No

Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

Compiled by Jean Robinson, VI Family Support Specialist and
Edgenie Bellah, TX Deafblind Project Family Support Specialist,
Texas School for the Blind and Visually Impaired

Abstract: Parent leaders share words of wisdom and their experience gained from raising children with visual impairments or deafblindness, including those with additional disabilities.

This July, the National Center on Deaf-Blindness (NCDB) made available a wonderful publication titled, I wish I had… Wisdom from parents of children who are deafblind. Prepared by Paddi Davis, Peggy Malloy, Betsy Martin-Richardson, the publication is a compilation of parents from across the country sharing their thoughts on their wisdom and experience gained by having a child who is deafblind. Of the many contributions made in I wish I had…, three are from Texas parents. Following is what they had to share:

I wish I had…

…kept a journal every week, especially about the good things happening in our lives. Kathy Sheriff, Willis, TX

… known the importance of holding my child as much as possible in the beginning. Instead of spending so much time trying to understand the diagnosis, I could have been bonding, rocking, playing, and dancing with my son. Touch is so important to these babies. If I could do it again, I wouldn’t stop touching him from the moment I met him. Erin Sefcik, Dallas, TX

… known that with all the tears of sadness there would also be tears of joy. Both sets of tears are unimaginable to most other parents. Most parents know certain things will happen as their child grows. In our world of parenthood, we coach, we teach, we model, and we pray. And when a milestone is reached, it is so meaningful and touching. The little joys of finally finding her toes. Her first words. Singing “You are My Sunshine” together. Following me around our home without her walker for the first time when she was 2 1/2, with me on the verge of wondering if it would ever happen. Identifying pictures by sight and using sign language successfully. When those events occur, you could never replace them or ask for more. All of those things that were on a list of things she would never do, now DONE. Tears of joy come and you will never feel more love or be more proud in your lifetime. Becky Lowell, San Antonio, TX

When we saw this publication, we were struck with our own wish that we had thought of asking parents this question all through the years of working with them. The opportunity presented itself this year at the graduation of the 2008-2009 VI Family Leadership class. Here are the graduates’ responses.

I wish I had…

… known other parents to help me cope with the emotional aspects of having a VI child.

… known earlier about all the different resources available that were available to us.

… known that when people stare, they aren’t always thinking the worst. Sometimes people are just curious and ready to learn about differences. I don’t always have to have my guard up.

… kept more involved in community activities

… been able to let anger go earlier and move forward.

… been able to develop better relationships with educators from the start.

… looked ahead rather than stay stuck in the “problems we had to face.” It would have been easier to see we are on a path to something rather than in a ditch.

… allowed more people to learn about my son.

… thought “outside the box” more often.

… just enjoyed the day with my son, more often.

As you read these parents’ thoughts, we encourage you to reflect on the lessons learned in your own journey. Not only does this give you the excuse to stop a moment and celebrate your journey thus far, but it prepares you for the moment when you will have a chance to help another parent learn from your experience. To receive a copy of I wish I had…, and read more family stories, go to .

by Millie Smith 

Experience stories are a powerful tool for functionally blind children because they combine literacy skills, language skills, and concept development related to real events.

The experience story sequence for a student with emerging braille literacy skills differs only slightly from the traditional approach for sighted children. It might look something like this.

  1. The event occurs. (The class might go outside to pick up fall leaves.) REMEMBER: THERE MUST BE DISTINCTIVE TACTUAL, AUDITORY, AND MOTOR COMPONENTS TO THE EVENT FOR THE BLIND STUDENT!
  2. IMMEDIATELY after the event, the class writes a story about the event. The teacher writes the language generated by the students on a chart.

    The braille user participates by contributing language and listening to the language contributed by peers.

    Sometimes braille users "write" in braille as the teacher writes in print on the chart. Usually the teacher and the student write only a few words of the text together in order to keep up with the other students. The whole sentence should be voiced even if only a word or two is written. If the general education teacher or a teaching assistant is doing this activity with the student, they may use grade one braille. The VI teacher brailles the complete material correctly as soon as possible and substitutes grade two braille for the grade one braille, if the student is learning grade two braille, so that when the student re-reads the material, the braille is appropriate. The advantage to having the braille user "write" as the language is produced is that a connection between language and writing is established in the same way that it is being established for the sighted peers watching the teacher put words on the chart.

  3. The braille user puts tactual pictures on the title page and throughout his story where ever appropriate. (Tactual pictures might include leaves and anything else the student noticed during the experience. BE OPPORTUNISTIC! PICK UP LOTS OF THINGS DURING THE EVENT THAT CAN BE WORKED INTO THE STORY.
  4. The braille user reads his story to his teacher, his peers, and family members using correct braille fluency movements pared with the language he remembers from step two. He is not actually recognizing words and letters at this point and should not be encouraged to slow down, use up and down finger movements to examine individual words and letters, or go back over words and letters. The emerging skill at this stage would be for the student to start matching words vocally and tactually by moving fingers to a new tactual unit when a new word is voiced. This is more of a one-to-one correspondence skill than it is a braille character recognition skill.
  5. The braille user collects stories and keeps them in library centers at school and at home so that he can re-read them frequently. Some braille word recognition may emerge as key words on title pages and in the story are remembered and used to identify favorite stories.

A baby plays with toys on a tray.“According to some researchers, vision is usually involved in 90% of the learning that takes place in early development” (Ferrell, 1996, p 89).

Do you know an infant or a child who appears to have difficulty seeing the world around him?  Have you noticed any unusual visual behaviors or difficulty in one of your students or patients?  Take a minute and find out how you can help put them in touch with agencies that may be of service.  Let’s help children maximize their education by maximizing their VISION!

The Statewide Leadership Services for Blind and Visually Impaired has created these brochures to share with parents, teachers, doctors, day care providers and others to make them more aware of the signs associated with vision impairment and where to go for resources and support related to intervention.

Download the Eye Find Brochure in English - PDF  DOCX

Warning Signs 

Atypical Visual Behaviors that might indicate the need for an examination and or assessment:

  • Moving closer to an object for viewing
  • Tilting of the head to view objects or face
  • Squinting
  • Sensitivity to light
  • Excessive rubbing of eyes
  • Excessive tearing
  • Consistent eye turn (amblyopia)
  • Rapid eye movements (Nystagmus)

Vision is not just in the structure of the eye.  These medical conditions might indicate the need for an assessment by a teacher of     students with visual impairments.

  • Prematurity (i.e. ROP)
  • Syndromes: (i.e. Down, Charge)
  • Stroke
  • Anoxia (oxygen deprivation)
  • Glaucoma
  • Cataracts
  • Albinism
  • Optic Nerve Hypoplasia
  • Cerebral Palsy 

Typical Visual Behaviors:

Birth

  • Focus on objects 8-10 inches away
  • Eyes have difficulty working together

3 months

  • Tracks moving objects
  • Eyes are beginning to work together
  • Beginning of a directed reach

6 months

  • Turns head to see objects
  • Accurate reach (depth perception)
  • Good color vision/favorite color
  • Sees at greater distances
  • Picks up dropped toys

12 months

  •  Shows interest in pictures
  • Points and gestures
  • Places shapes in board
  •  Judges distances
  •  Recognizes own face in mirror.

18 months

  • Recognizes familiar objects
  • Scribbles with crayons or pens
  • Shows interest in exploring

(AOA.org) 

By Millie Smith, Education Specialist, TSBVI VI Outreach
with help from Roger Toy, Occupational Therapist, TSBVI

Versión Español de este artículo (Spanish Version)
Wersja polska (Polish Version)

Johnny is an eight year old child with visual and multiple impairments. He has some light perception and fairly good voluntary movement in his upper extremities although he can't walk. He is about to engage in an activity designed to teach him to brush his teeth. The brush suddenly appears in Johnny's hand. His teacher places her hand over his. The pressure applied to hold the brush is hers. The thought processes to plan the movement of the brush is hers. The spatial memory used to move and place the brush is hers. Finally, her hand and the brush are gone. Toothbrushing is finished. What has Johnny learned? He has learned to be passive and to tolerate having his hands moved for him.

Many teachers and parents of children with visual and multiple impairments are told to provide a level of assistance during activities commonly called "hand over hand." When done correctly with permission, minimal direction and appropriate waiting time, this teaching strategy can be very effective. When done incorrectly with complete other-directed manipulation throughout a task, children lose control of their hands and any potential they might have for learning through the tactual medium. They risk becoming increasingly passive by pulling their hands away and rejecting objects. These students may not actually be tactually defensive, but rather tactually avoidant. Instead of using their hands as tools to interact more and more with the world outside their bodies, they withdraw, turn ever more inward, and spend most of their time engaging in self-stimulatory behaviors. Like Johnny, they have learned to be helpless.

Encouraging Johnny to use his hands confidently and competently to access information about his world and to interact with his world to the fullest extent of his ability requires a two-part intervention. First, create a supportive learning environment and then, facilitate development of functional tactual skills.

Creating a Supportive Learning Environment

Children with visual and multiple impairments tend to have very limited experience with objects. They often form strong attachments to one or two objects and reject everything else. What they choose to do with the objects may be nonfunctional and repetitive. Our job is to widen the experience of these children to include a rich variety of objects and interactions. To do that we must establish a relationship grounded in mutual respect and trust. The key to a trusting and respectful relationship with a child who can't see is to begin by acknowledging that he has a right to control his own hands in exactly the same way that we have a right to control what we look at. We all want to facilitate learning, and the fastest and easiest way to do that is to grab a child's hands. As frustrating as it might be for us at times, development is best facilitated by encouraging rather than demanding (Nielsen).

Why won't Johnny hold his toothbrush?

There are probably many reasons Johnny won't hold his toothbrush assuming he has the motor ability to grasp. When the brush is placed in his hand, he may not know what it is. Most people experience some anxiety about touching something unknown, even when they are in control of the touching. That's why we blindfold people in Halloween fun houses and ask them to feel creepy stuff. Children who cannot see what is around them may be understandably reluctant to touch and hold the unknown (Fraiberg). Or, Johnny may know the object is a toothbrush, but not know what he is supposed to do with it. He may be dropping the toothbrush because he has not memorized the sequence of movements that goes with the rest of the activity (Millar). Another possibility is that Johnny recognizes the brush and anticipates that something he doesn't like is about to happen. He may drop the brush because he hopes that will prevent someone from grabbing his hands and brushing his teeth.

So what do I do to create a more supportive learning environment?

If Johnny won't hold anything and he doesn't like brushing teeth, we can't start with a toothbrush. We have to start with creating a trusting relationship with Johnny. We demonstrate that we can provide an environment that contains things that he likes to touch and hold. We also demonstrate that Johnny can be in control of his own hands. He can control what he wants to touch, what he wants to do with it, and when he wants to stop. It is very important to acknowledge that no teacher or parent will ever do this perfectly. The good news is that children don't seem to require perfection in order to trust us. As long as we are letting them be in control of their hands most of the time, we will probably have the relationship we need.

Here are some suggestions for how to build this relationship:

  1. Offer an object by making a sound with it close to the child or by using the object to touch some part of the body less sensitive than the palm of the hand, usually the arm or leg (Nielsen). Wait for a reach. Repeat the offer if necessary. Do not repeat the offer immediately if the child has a negative response. Offer something else. It is fine to offer something previously rejected at a later time as long as the object is quickly removed if rejected again and as long as the original rejection wasn't extreme.
  2. Engage in parallel play guided by the child. After the child does something with an object, imitate his action. Try to prolong the interaction by taking turns, he with his object, and you doing the same thing with a like object or a shared object (Nielsen).
  3. Model new actions with the object of interest. Offer your hands to the child as you do something with an object. Place your hands under the child's hands, but don't persist in maintaining contact if he removes his hands. This is the "hand-under-hand" method (Miles).
  4. Create safe, consistent, interesting object environments. The child should have total control over these environments. No one should guide his hands or verbally direct his activity when he is in these special environments (Nielsen). Make sure these environments are rich. Some plastic toys are okay if they are favorites, but most children find things like screen door springs and wind chimes much more interesting. Be sure to take the usual choking-hazard precautions.
  5. Always ask permission before taking the child's hand. This can be done non-verbally by placing your hand on top of the child's hand. If the child does not remove his hand, proceed.
  6. Always cue the child so that he knows what you are going to do before you take his hand. For example, give the child a spoon to let him know it is time to eat.
  7. If the child is resisting attempts to engage his hands, leave his hands alone and drop back to reciprocal whole body interactions such as rocking, swinging, bouncing, etc. Remember you are using these interactions to build trust so that the child will value time spent with you. In these interactions, the child will use his body to signal when he wants you to continue or stop (Van Dijk). As he develops trust that you will respond to these signals, he will be more likely to expand his contact with you to eventually include hands.

Yes, but, how do those teeth get brushed?

So, if you know Johnny likes things that vibrate, you offer him a vibrating toothbrush by turning it on close to his head. He might reach over and touch it. If you hold it there so he understands that he is in control of what happens next, he might grasp it. If you turn loose at this point, he might hold it. Then you let him do anything he wants with it. Don't blow the trust by grabbing his hand and making him brush. Johnny needs to memorize movement sequences in activities he really likes before you take on toothbrushing. In the meantime he is learning that he can trust you while he is also finding out a few things about the parts of a toothbrush. Later this will come in handy when you use a brush to cue him that you are going to brush his teeth and he recognizes it. Yes, teeth still have to be brushed, just don't touch Johnny's hands while you are doing it. If he brings his hands up to yours and participates a little with his hand over yours, you will know that you are making progress. Johnny may begin bringing his hand up to push yours away to signal that he wants you to stop. Honor this communication by stopping for a moment. Then begin again. Johnny has learned that he can use his hand to create short breaks. He may try for more, perhaps controlling the amount of pressure you apply or where you place the brush. As Johnny learns that he has more and more control over the activity when his hands are involved, the involvement will gradually increase.

Facilitating the development of functional tactual skills

The cognitive, communicative and social development of children who are tactual learners depends to a large extent on how much information they can access by using their hands and other parts of their bodies to touch and move. A short clarification might be helpful here. The children we commonly refer to as "tactual learners" are really somatosensory learners. The somatosensory system includes the tactile, proprioceptive, and kinesthetic components of perception. The proprioceptive and kinesthetic components relay information to the brain about the position of parts of the body and about what they are doing (Nagaishi). Braille reading is really not a tactual skill; it is a somatosensory skill. The discrimination of the individual characters is primarily tactual, but all the braille fluency skills, finding the next line, etc., are primarily proprioceptive and kinesthetic. For a child without vision, the same perceptual components apply to eating, finding a favorite toy and just about everything else. Historically, one of the highest job priorities for teachers of the visually impaired has been the development of somatosensory skills for children who are potential braille readers. For some reason, there has not been much emphasis in the field of visual impairments on the development of somatosensory skills for students with multiple impairments. In many places the role of the teacher of the visually impaired with this population has been limited to vision stimulation activities (Lewis). Children with visual and multiple impairments are often passively manipulated through tasks without due consideration to building a sound somatosensory base of knowledge about the world.

Why does the teacher of the visually impaired need to be involved; can't the occupational therapist do it?

There is some overlap between the roles of the occupational therapist and the teacher of the visually impaired working with children with visual and multiple impairments. There are also some clear differences. Occupational therapists have a great deal of information about the intactness of the somatosensory system that only they are trained to assess. They are the professionals who guide the team in therapeutic interventions to address problems with the tactual system such as hypersensitivity or hyposensitivity, difficulty with sensory integration and adequacy of sensation thresholds for discrimination. They help address many motor issues related to the potential for the use of the arms and hands to access tactual information. Some of these include trunk stability and range of motion related to the ability to reach, muscle tone and strength, and reflex development. They look at the child's ability to use proprioceptive and kinesthetic information to motor plan tasks (Heydt and Allon). All of this is essential information for the teacher of the visually impaired to have. A close working relationship between occupational therapists and teachers of the visually impaired is extremely helpful.

Occupational therapists do not typically determine what tactual/somatosensory skills a child will need to use to compensate for lack of vision. But these compensatory skills must be learned in order to develop a solid base of cognitive, communicative, social, and functional skills at the highest levels possible. The responsibility for these skills being learned belongs to the person responsible for teaching compensatory skills related to loss of vision - the VI teacher. For instance, some information is accessed by everybody tactually whether they can see or not. When we want information about the temperature of a thing, we touch it. But a tactual learner is accessing a great deal of information about his world with his hands and other parts of his body because he cannot access the same information visually. For instance, the easiest way to find something is to look for it. If a child cannot see, he has to learn the compensatory skill of searching tactually or, more correctly, somatosensorily. As we all know, that skill does not develop automatically. It has to be taught.

If I am going to facilitate development of tactual skills what do I teach?

The literature in the field of visual impairments tends to talk about tactual skills in terms of pre-braille instruction (Smith and Levack). For instance, in their article on tactual development and its implication for the education of children who are blind, Griffin and Gerber (1982) describe a sequence of four stages:

  1. Awareness of the tactual qualities of objects such as textures, temperatures, vibrating surfaces, and different consistencies.
  2. Shape conception and recognition (three dimensional forms).
  3. Understanding of graphic representation (e.g. raised line forms).
  4. Utilization of symbology (braille).

The sequence described by Griffin and Gerber does not address tactual knowledge of the world of people, objects, and actions. Functional tactual skills instruction based on a child's need for knowledge and participation in functional and social activities might include the following (Smith and Levack):

  1. Locating: randomly or intentionally searching for an object.
  2. Exploring: moving the hand over something to get information about the tactual properties.
  3. Manipulating: intentional movement of the object.
  4. Recognizing: associating an object with a memory of the object.
  5. Comparing: discovering similarities, differences, and preferences. Matching and categorizing.
  6. Communicating: using objects to request, refuse, comment, and question.
  7. Organizing: finding objects in their usual place, returning objects to their usual place, sorting or categorizing by placement, gathering materials for a task.

Why are these skills functional?

Many children with visual and multiple impairments access information primarily through their tactual sense. They do this by participating in activities using their hands or some other part of their bodies. The skills they need to actively participate are locating, exploring, recognizing, manipulating, comparing, communicating, and organizing. With these skills a child without vision can participate at some level in games, dressing, chores, and just about everything else.

Why does tactual learning have to be active rather than passive?

Tactual learning as it relates to developing skills that compensate for lack of vision falls into two categories - object knowledge and function knowledge. One requires more activity for learning than the other.

Without vision, knowledge of objects is gathered by sensors in the skin (cutaneous sensors) that give information about temperature, weight, texture, form, size and length (Warren). Cutaneous sensors are located all over the skin surface of the body. The finger tips, lips, tongue and palm of the hand are extremely efficient at gathering this information. Because of that, objects are more easily recognized when explored by the hand or mouth. If hands and mouth are not available for tactual learning about objects, other parts of the body may work, but not as well. Some of the finer elements which help the child discriminate one object from another may be lost. For example, a child might be able to tell that an eating utensil is being placed on his arm, but not be able to tell that the object is a fork and not a spoon. Detection of fine differences seems to be improved by movement of the hand over the object and diminished by movement of the object over the hand or some other skin surface. So, active exploration helps discrimination, but passive exposure may be enough for some recognition. A child without vision who is using his mouth to explore objects because he cannot use his hands should never be prevented from engaging in this behavior as long as he is truly exploring.

Function knowledge is a very different matter. A child may recognize his favorite toy but be completely unaware of the function of the toy. This happens to children without vision all the time and it tends to add to their social isolation. For instance, Johnny's favorite toy is a Lego. He smiles when he finds it with his hands. It is clear that his cutaneous sensors have given him the information he needs about the size, length, weight, texture, temperature, and form of the object so that he can recognize it as his Lego. Johnny happily begins to play with the Lego by tapping it against his teeth. He has no knowledge of the function of the object. He has never seen other people play with Legos. If he understood early on, before his tapping behavior was well established, that a Lego is supposed to be manipulated with other Legos to make new forms, he could play with other children doing this activity and would probably enjoy it more than tapping. Johnny might not be ready to start with the function of snapping Lego blocks together, but he could begin with pulling them apart. He might even need to do that with a combination of hand and teeth for a while before moving on to manipulating it with both hands. He would still be acquiring knowledge about the function of Lego blocks.

Tactual learners get information about function very differently than sighted children. Sighted children learn function primarily by imitating what they see others do with the object. Tactual learners learn function primarily by memorizing sequences of movements (Millar). Memorization occurs when information is gathered through the somatosensory system. In order for information to be gathered there must be a conscious interaction between brain and muscle. This only happens when a child is controlling at least some of his movements. Control allows information about joint movement to be stored so that movements can be repeated almost automatically in the future. If the child is passively manipulated through a task, no memory of the event is stored and function cannot be learned.

How do I get started?

Johnny's team began with a structured observation of his functional tactual skills. Five typical activities were chosen and videotaped. The classroom teacher, VI teacher, paraprofessional, and motor therapists watched the tapes and noted behaviors in each activity corresponding to the functional tactual skills categories mentioned earlier- locating, exploring, manipulating, recognizing, comparing, communicating and organizing. The tapes were sent home and input was provided by the family. Johnny's assessment is shown below.

Assessment of Functional Application of Tactual Skills
Student: Johnny Observer: N. Levack
Applied ContextLocatesExploresManipulatesRecognizesComparesCommunicatesOrganizes
Eat Breakfast. Obtains spoon. Systematically searches for muffins.   Places spoon in bowl. Demonstrates displeasure given wrong object. Performs appropriate action with spoon.   Uses hand to refuse interaction.  
Play with velcro toy. Retrieves ball from usual location. Moves ball over face. Brings ball to mouth. Squeezes ball. Pulls apart ball and velcro pad. Anticipates finding ball when given pad.      
Travel to gym, open door. Finds door handle. Retains door handle placed in hand. Uses fingers to gain information. Pulls door. Moves part of door handle. Performs appropriate action with handle.      
Put lotion on feet.   Plays with toes and fingers. Squeezes foot. Moves part of foot (toes). Performs appropriate action with lotion.      
Put on socks and shoes.   Uses fingers to find opening. Pull sock onto foot. Anticipates event given sock.   Uses hands to request interaction.  

The team learned that Johnny's recognition skills were good. He appeared to be ready to develop more comparison and communication skills but had very few opportunities to use these skills. Johnny's manipulation skills were good with two objects, a sock and his own foot, and very limited with everything else. Location skills were minimal. Johnny made almost no effort to find objects except for his favorite food during mealtime. Some of Johnny's exploration of objects was oral but the team did not consider this to be a problem because it was quick and he used his hands much more.

Based on this assessment, the team's first priority was to increase the number of times within familiar routines that Johnny located objects. For instance, after lotion was squirted into his hand, Johnny loved to rub the lotion on his bare foot. He made no attempt whatsoever to obtain lotion. The team decided to present the lotion bottle with lotion smeared on the outside by holding it close to Johnny's nose. They would wait for Johnny to reach for the bottle. If he didn't, they would touch the bottle to the back of his hand and wait for a grasp. Once Johnny got lotion on his hand by contacting the bottle, he could then rub the lotion on his foot. They would then repeat the procedure several more times. A backward chaining method was to be used to gradually increase the distance between Johnny and the bottle. The location of the lotion on the outside of the bottle was also restricted to the flip-up top area to prepare Johnny for further development on learning to manipulate the lid and squeeze the bottle.

Here are some more examples of interventions planned by the team to encourage development of more functional tactual skills for Johnny.

Functional Application of Tactual Skills Planning Sheet
Student: Johnny Observer: N. Levack
Applied ContextLocatingExploringManipulatingRecognizingComparingCommunicatingOrganizing
Eat Breakfast.   Leave part of paper wrapper on muffin. Break muffin into pieces.   Put undesired food items on plate with muffins. Touches muffin to request muffin.  
Play with velcro toy. . Put variety of different objects on pad.          
Travel to gym, open door. Place hand on door. Allow search for handle..            
Put lotion on feet. Touch bottle to cheek or hand, wait for reach or grasp. Use fingers to find lid. Lift flip top. Squeeze bottle.   Put lotion bottle in container of various bottles when finished Touches lotion bottle to request lotion.  
Put on socks and shoes. Touch sock to cheek or hand, wait for reach or grasp.            

Conclusion

One of the characteristics shared by every member of the human race is that we all want to have as much control over our lives as we possibly can. The amount of satisfaction we derive from living is directly related to how much of what we like we are able to get and how much of what we don't like we are able to avoid on a daily basis. If the company that makes our favorite lotion goes out of business or we get arthritis and can't open the bottle any more, we usually get pretty ticked off and realize that those things were very important to us. Functional tactual skills empower children without much usable vision to have more control over their environments and more ability to participate in relationships with others. Johnny has the potential to develop a preference for a particular type of lotion after comparison, to go to the place in his room where it is kept, to get it when he wants it, and to apply it independently. These are the little things in life that we take for granted until something beyond our control interferes. How could we think that it is not important to teach Johnny the skills that he needs to derive the same pleasures in life simply because he may never develop the ability to read braille or earn a salary?

References

Fraiberg, S. (1968). Parallel and divergent patterns in blind and sighted infants. Psychoanalytic Study of the Child, 23, 264-300.

Griffin, H.C., & Gerber, P.J. (1982). Tactual development and its implications for the education of blind children. Education of the Visually Handicapped, 13 (4), 116-123.

Heydt, K., & Allon, M. (1992). Motor development: gross and fine motor skills. In C. Cushman, K. Heydt, S. Edwards, M.J. Clark, G. & Allon, M. (Eds.), Perkins Activity Resource Guide (Vol.1, chap. 5). Watertown, MA: Perkins School for the blind.

Lewis, S. (1996). The Editor's Talk: They learn like blind kids. RE:view, 27 (4), 147-148.

Miles, B. (1997). The hands of a person who is deafblind: tools, sense organs, voice. The Individual in a Changing Society: National Conference on Deafblindness Proceedings (volume 2). Watertown, Mass: Hilton/Perkins Program.

Millar, S. (1981). Self-referent and movement cues in coding spatial location by blind and sighted children. Perception, 10, 255-264.

Nagaishi, P. (1993). Motor development. In Chen, D. (Ed.), First Steps: A Handbook for Teaching Young Children Who Are Visually Impaired. Los Angeles: Blind Children's Center.

Nielsen, L. (1990). Are you blind? Copenhagen: SIKON.

Smith, M. & Levack, N. (1996). Teaching Students with Visual and Multiple Impairments: A Resource Guide. Austin, TX: Texas School for the Blind and Visually Impaired.

van Dijk, J. (1988). The deaf-blind child and his outgrowth toward the world of symbols. Papers presented at a national conference on education for deaf-blind children. Tallahassee, FL: Florida State University.

Warren, D.H. (1984). Blindness and Early Childhood Development. New York, NY: American Printing House for the Blind.

Spring/Summer 2010 Table of Contents
Versión Español de este artículo (Spanish Version)


By Jean Robinson, Outreach Family Support Specialist and
Edgenie Bellah, Texas Deafblind Project Family Support Specialist
Abstract: Parents of children with visual impairments give examples of how their children have given back to their communities.
Keywords: Family Wisdom, volunteering, visual impairment, multiple disabilities, Circle of Happiness.


The book How Full is Your Bucket?, by Tom Rath and Donald Clifton, uses the theory of the Dipper and the Bucket as a metaphor to describe a person’s life satisfaction level. Imagine that everyone has an invisible bucket and an invisible dipper. We are at our best when our buckets are overflowing and at our worst when they are empty. The authors propose that in each interaction, we can use our dipper either to fill or to dip from others’ buckets. Whenever we choose to fill others’ buckets, we in turn fill our own.

Children with disabilities spend much of their day receiving services from parents, teachers and therapists. In other words, they are typically in the position of having their buckets filled. Being a passive receiver can keep a child from developing a sense of self that comes from having a meaningful purpose. Discovering that he or she can give, as well as receive, provides a child the opportunity to build self-esteem and self worth. She experiences the benefits of filling others’ buckets!
Learning begins at home with a child participating in household chores. In addition to learning how to be more independent, your child gets the chance to experience contributing to the daily operations of his or her home. Again, he or she gets to fill someone else’s buckets. This is true for all children—regardless of their age and abilities—and participation can be along the continuum from partially participating to being totally independent. For example, a child can help set the table by carrying the dishes Mom stacks on her wheelchair tray and then giving encouragement to her brother while he sets each place.

The same child can also use her wheelchair tray to carry folded laundry. The benefits can also be achieved at school with the child having responsibilities such as delivering the attendance or operating a recycling program.
Another great way to give your child a chance to fill other people’s buckets is through volunteer experiences in the community. There are literally hundreds of volunteer opportunities in your local community. Pick one that meets your family’s style and passions and make a commitment to do something with them. To get started you may need to go as a family to show the staff the things that your child is capable of doing. This is where practicing home responsibilities pays off. Skills developed at home can be used to sort food at the area food bank and fold towels at the local animal shelter. But while learning to transfer the skills to a new place and building employment skills is valuable to your child, the personal satisfaction they will have by giving to others is priceless.

To give you real life examples of the benefits of volunteering, we asked parents to share their experiences on the Texas Visually Impaired Family Network . As you plan your summer with your children, we hope this small sampling of volunteer ideas will inspire your family to find (more) opportunities to give to others.

ALISON:

My daughters and I have done a number of fun runs/walkathons. Madi actually served on a “personal sag wagon” at the MS150 bikeathon last year. She kept the driver company, and held up signs along the way that encouraged us and cheered us the whole way.

We have helped people clean up their yards after the hurricanes. Madi is pretty strong and can carry limbs a distance. Also we have volunteered at the Food Bank.

Madi and her sister, Meglyn have done some stuff with the Girl Scouts as well, like face painting booths and such. Madi’s fine motor skills limit her effectiveness, but she really loves to be a helper.

For a few months, Madi did some “volunteer work” by sitting next to another student on a school bus to help monitor her breathing and verbalizations in case she got uncomfortable. I don’t really know how effective she was at that, but she felt good about serving in that way, and the mom and the bus aide said it was great. We love volunteering as a family, but need to find more ways so that Madi can be truly helpful.

SUZANNA:

We volunteered at a sports camp at TSBVI, a sports camp in Colorado Springs and at a sports recreation center in Houston.

CAROLINE:

When my daughter, Lauren Daley was 3, she volunteered by donated 9 inches of her fantastic blonde hair to Pantene’s Beautiful Lengths. She got a letter back saying that her hair was used to make a wig for a child who has cancer. “Never too young to give back.”

With busy, overscheduled lives it is easy to put volunteering on the back burner. If this is a priority for you, initiate a discussion with your school team. Talk about the possibilities and make it part of your child’s IEP. Remember to ask for assistance from your specialist with DARS/DBS. They know about work experience programs offered in your area and can help you make those connections.

RESOURCES:

How Full Is Your Bucket? For Kids by Tom Rath and Mary Reckmeyer. Gallup Press, 2009. National Braille Press November 2009 Book Club Selection.

Have You Filled a Bucket Today? A Guide to Daily Happiness for Kids by Carol McCloud. Print/Braille edition, $9.95, Ages 4-9, 1- 17-2 - 1 0; 1-888-9 5-89 5

“Preparing for the Workplace Pays Off for Children with Disabilities.” See/Hear, Winter, 2004.

“Kayleigh Has Her First Job!” See/Hear, Summer, 2005.
www.thevolunteerfamily.org/Volunteers/Ideas. aspx

www.volunteermatch.org/

kidshealth.org/teen/school_jobs/jobs/volunteering.html

www.justgive.org/how-to-give/giving-resources/ ideas-for-volunteering.jsp

www.bygpub.com/books/tg2rw/volunteer.htm

www.1-800-volunteer.org/1800Vol/OpenIndexAction.do

www.volunteeringinamerica.gov/index.cfm

By Kate Moss (Hurst), Education Specialist, Texas Deafblind Outreach

Originally published in the See/Hear Newsletter, Spring 2004 Edition by TSBVI Outreach Programs

Abstract: This article shares information from Dr. Lilli Nielsen’s book, Are You Blind? It focuses on five phases of educational approaches that teachers are to use in working with children if they are using an Active Learning theory approach.


Dr. Lilli Nielsen is the author of many books that look at the way children with visual impairments learn, especially those with other disabilities. Over a period of more than twenty years, she has developed her approach to working with these children that is called Active Learning. This approach is based on the notion that all children learn exclusively by doing until the developmental age of about three. The actions of examining and experimenting with objects using their bodies, is the foundation for the development in cognitive, motor, problem-solving and social skills. She believes that our role in helping children to learn is to create environments that build on skills the child already has, to encourage him to use his body and mind for higher-level tasks. In her book, Are You Blind? She discusses five phases of educational treatment that teachers are to use in working with children. This article will examine these five phases and share some of the highlights of this book.

It is important to note that before beginning to work with any child, a thorough assessment of his/her skills and emotional development is needed, so that you know where to begin. If you start too high you will likely frustrate the child and if you start too low, you run the risk of losing the child’s interest and motivation. Dr. Nielsen has developed a comprehensive assessment tool, the “Functional Scheme” (Nielsen, 2000), and a curriculum to help teachers called the FIELA Curriculum – 730 Environments (Nielsen, 1999).

Phase I: Technique of Offering

Children at this Level

Children at this level of development may seem reluctant to do much. They are often passive or engaged in self-stimulatory behaviors. Their world exists for the most part within the confines of their own bodies. They seldom seek out others for social interactions and may have limited experiences interacting with objects and their environment. This generally occurs because of motor disabilities or health issues that make movement difficult, and/or sensory disabilities that prevent the child from being enticed by the sights and sounds that motivate a typically developing child.

The Role of the Adult

At this stage, Lilli recommends using the technique of offering with the child. First of all the adult will need to set up an environment, such as a Resonance Board with many motivating objects, so that the child can come in contact with them incidentally if he or she makes any movement. The adult will also be with the child, either sitting alongside the child or supporting the child in a sitting position from behind if the child trusts the adult enough for this close contact. If not, the adult needs to respect the child's need for distance and only move in as close as the child seems comfortable with at any time. One of her goals at this level is just to have the child stay in the same room with her.

The adult’s first job is to simply offer the child toys and objects by placing the objects under the child’s hand. The child may touch or grasp the objects when and how he or she pleases. The adult does not talk to the child while the child explores the object in his or her own way. If the child drops or pitches the object, the adult simply offers another object. While offering the objects, the adult also must observe and take note of the objects the child seems to enjoy and those he seems to dislike. What is it about the object that seems to interest the child? What are the actions the child takes on the object? How does the child explore the object and with what physical actions (banging, mouthing, throwing, rolling, etc.)? What distresses the child and how does he show that distress? Does the child show interest in contacting the adult? How does he do that?

Purpose of the Offering Technique:

  • To convince the child that he can trust the adult has no intention of demanding that he does anything at all. Lilli’s only demand is that she wants to play in the same room as the child.
  • To observe the reactions of the child.
  • To learn about the child’s likes and dislikes.
  • To find out what may frighten the child most.
  • To learn about the child’s way of contacting, using this to assess the emotional level of the child.
  • To introduce sound self-activity.
  • To provide the child with the basis for successful introduction to phase II.

Points that Lilli Emphasizes at this Level:

  • Do not move too close to the child too fast — move in a little and watch his reaction.
  • Display an active and positive interest in whatever the child is doing.
  • Some children will not initiate play until they feel certain the adult has left the room. Periodically stop playing for a minute to a minute-and-a-half and just sit silently to see how the child responds. Does his behavior appear to be an invitation for you to continue your activity?
  • Everything the adult does should be done as an “offer.” If the child attempts to initiate an activity, don’t make a big deal about it; act as if he did that every day.

Phase II: Technique of Imitation

Children at this Level

Children at this level are generally somewhat more interested in things outside their own bodies, although they still may exhibit withdrawal, especially with unfamiliar people or people they do not trust. Their interests may also be very limited in scope. They may continue to show a lot of self-stimulatory behaviors, but are more aware of others and can be enticed into interactions with trusted people. They typically don’t initiate many interactions or have limited ways to make contact with others. They are able to play more with objects, but their play with others is more at a level of parallel play rather than interactive play. They also may have only a few actions they perform on objects and have only limited participation in activities. At this point the child may seem unsure of himself in many of his actions.

The Role of the Adult

At this level the adult continues to set up the environment with objects and activities that are highly motivating to the child. For example, if the child likes an object that vibrates, the adult will try to find many different objects that vibrate in differing ways. If the child is particularly fond of a certain color or texture, the adult finds things that seem to expand the child’s experience with other objects that share that quality. One child we know liked banging on and playing with disposable aluminum pie pans. The quality about these objects that seemed to be of most interest to him was the sound they made and that they could be bent to change shapes. He might also have enjoyed that they were lightweight, shiny and cool to the touch. Other things that could be offered to him would include: many sizes and types of metal containers such as individual pot pie pans, turkey roaster, tin cookie canister, metal coffee can; sheets of shiny aluminum foil; wire whisks; metal springs; metal spoons; metal ball bearings or Chinese Mediation balls; and other shiny and/or pliable materials.

In this phase the adult begins by imitating the actions of the child on the objects. For this reason, it is a good idea to have multiple numbers of an object. If the child bangs on the object, so does the adult; simply playing alongside the child at the same level. After a time, the adult can introduce a new action with the object and see if the child will imitate him. If the child does, great! If not, the adult should go back to imitating the action of the child again. This is a conversation of a sort, a turn-taking game. ’“You show me something, and I pay attention and copy you. Now I show you something. Maybe you will pay attention to and copy me. Now it’s your turn again.”

The Purpose of Imitating

  • To increase the child’s interest in activities happening nearby.
  • To increase the child’s ability to take initiatives.
  • To increase the child’s belief in himself.
  • To introduce activities and movements not as yet performed by the child.

Points Lilli Emphasizes at this Level are:

  • Imitation is primarily through auditory and tactile sensory modalities.
  • If the child throws an object, don’t correct him/her! Pick up the object, repeat your play and then place it before the child. It is best to have two of each object — one for child and one for adult.
  • The adult should begin by imitating child, then add some more constructive games (e.g., putting materials together or into one another) briefly before returning to the action the child began.
  • An increase in crying or screaming in a child who was doing that behavior before should be read as a positive “call for attention” from the adult.
  • Your goal is to give the child the opportunity to discover that being with the adult is “pleasant and exciting, and may include new auditory and tactile experiences.”
  • You also want the child to have the opportunity to “discover that he can take initiatives and that doing so leads to the ability to master something in his surroundings.”
  • He learns he has more actions to contribute to the interaction. This provides him with growing self-identity and ability to initiate interactions with other people.

Phase III: Technique of Interaction

Children at this Level

Children at this level are beginning to be interested in more interactive types of games (Lilli calls these “you to me and me to you” games). For example, you might have a bowl with marbles that you both hold on to and take turns pushing and pulling it back and forth between you. You want to see the child attempting to take a turn. The child may not necessarily initiate these games in the beginning at this level, but can be more easily engaged with others. He may, at times, want to take time out for his own exploration of an object, but will come back to the adult to share his interest after a time. This is the child that is interested in his environment and the actions of others and so is ready to begin learning that he can help others. This is a child who may also need support to transition from an enjoyable, interactive activity to a new activity without the adult. Some children at this level may fuss when an interaction comes to an end. It is as if the child were saying, “I want you to stay” and signals an emerging self-identity. The child begins more and more to attempt to make contact with others as he progress at this level.

The Role of the Adult

The adult sets up situations and environments that will foster interactive games. It is important for the adult to be patient and wait for the child to take his turn without trying to persuade him to act. Simply be quiet and still. If the child is trying to complete a motor skill that he has not yet mastered but matches his motor development, the adult can say, “You can help me.” If the child will use his hands, the adult needs to provide every opportunity for the child to familiarize himself with the activity and participate, and to complete the moment when he wants to do it. If the child will not use his hands, the adult can model the activity as close to the child’s hands as the child will allow. This allows the child to have control of his hands, and he can withdraw them when he needs a break. Lilli also cautions us to stop playing the game with the child while the play is still enjoyable. If it goes on longer than the child enjoys, the child may be unwilling to continue to interact with us. Another point Lilli makes is about the adult giving the child “presents.” Say “I put milk in your cup,” instead of “There is milk in your cup.” The whole notion of “yours versus mine” helps promote the child’s self-identity. Use a phrase like, “Your toys are on your shelf and my toys are on my shelf.” The adult also prepares the child when it is almost time for the interaction to come to an end so that the child does not see the adult as rejecting him.

Purpose:

  • To help the child to learn sound dependency on one or several people.
  • To help the child to initiate interactions.
  • To enhance the child’s development of self-identity.
  • To give the child the basis for social development.

Points Lilli Emphasizes at this Level:

  • Focus in on “you to me and me to you” games.
  • If the child becomes interested in something he wants to explore on his own, this should be respected. Wait patiently for a blind child to use his fingers to “look” at the object.
  • It is important always to wait for the child to initiate his part of the game.
  • Complete an action that may be too complex for the child to do, but at the same time tell the child he can “help” with the action.
  • Move at a slow pace. Know when the child “has enough to consider for a while.”
  • Tell the child before you come to the end of the activity that you will be leaving and that you are going on to a new activity. He may continue to play on his own if he chooses to.
  • If the child begins to say “more” or “again,” names the adults, or seeks out adult attention, he is ready for Phase IV while continuing with Phases I-III.

Phase IV: Technique of Sharing the Work

Children at this Level

The purpose of using the techniques of phase I, II, and III focuses on the child’s emotional development. It is done by establishing “an exchange and balance between periods of interaction and sound self-activity, between dependence and independence.” In the next phase, the child is at a place where he is ready to learn that taking action and interacting with others does not mean that he has to do everything or do it perfectly. The child exhibits confidence in performing some actions or activities. He has some beginning understanding of time and a sequence of events. He may appear threatened when familiar activities are changed slightly.

The Role of the Adult

Set up environments and activities that give the child tasks to do that are based on the things the child has experienced success in doing. In the beginning the tasks can be completed in a few seconds up to a few minutes without any consideration for how perfectly the child can complete them. The adult needs to let the child know which part of the tasks he will complete and which part the adult will complete. If the child is reluctant to do the task after being asked several times, the adult can suggest they do it together. The adult must make sure to give the child plenty of time to complete the task, but if he still won't do it, consider if the task is too hard. In complex tasks the adult may need to use various techniques (e.g. offering, imitation, etc.) for different parts. Let the child know how long the task will last and what will follow. This is when you can begin to teach time concepts like yesterday, today, tomorrow, now and next. It is important to have an established schedule.

Purpose:

  • To increase the child's experience of success.
  • To involve the child in new social relationships.
  • To increase the child's interest in acquiring new abilities.

Points Lilli emphasizes at this level:

  • Help the child learn that to be the one who does something does not necessarily mean that one has to do everything or do it perfectly.
  • The abilities the child has been successful with in previous phases form the basis for deciding which activities can be used for the technique of sharing work.
  • Keep tasks short (few seconds or minutes) initially, accept whatever the child does as correct.
  • Explain each time which parts of the activity the adult will perform and what the child will do.
  • Give plenty of time for the child to initiate the task and wait silently and calmly — be neutral.
  • Let the child know how long the activity is supposed to last.
  • Try to keep the environment the same or only make gradual changes.
  • Before going to more complicated and longer lasting activities the choice of technique for every part of the activity should be given careful consideration.

Phase V: Technique of Consequence

Children at this Level

Before using techniques at this level the child needs to have an emotional age of two years. This is when the child is ready to learn that his own actions have consequences. The child must show some confidence in what he can do and feel secure interacting with others generally. He may still have some difficulty initially in handling changes, but begins to show more coping skills at this level.

The Role of the Adult

The adult needs to model how consequences work for the child through a discussion of the adult’s actions. By this I mean things like saying, “I have to stop playing and cook dinner, or you will not have anything to eat.” Or, “I need to ask you to wait; I need to find a clean shirt for you.” Then after a time the adult begins to set up situations where the child can experience the consequences of his actions. For example, “If you want me to pour more milk, you must put your glass on the table.” The adult may accept a less than perfect response from the child, and may need to offer encouragement either through prompting or modeling. For example, “See you can put your glass here.” The child begins to understand choice-making.

Purpose:

  • To help the child to endure meeting demands.
  • To help the child to endure changes in life.
  • To help the child to feel self-confident, which is fundamental to the ability to make decisions about his own life.
  • To establish the basis for the sense of responsibility.

Points Lilli Emphasizes at this Level:

  • When the child feels secure and confident in performing different activities and has received information about the consequences involved in activities, it should be possible to let the child experience consequences. BUT only through activities the child is able to perform.
  • As the child is able to fulfill more and more requests he may demand more attention — don’t overly praise but rather act as if it is the most natural thing in the world that he can do something.
  • As independence increases the child may be able to tolerate that he sometimes is unable to succeed in what he intends to do. He will become better able emotionally to accept significant changes in his life. As he moves higher, he will be able to make friends with other people, decide when faced with situations that he has a choice.

Conclusion

Are You Blind? is a book that offers a great deal of guidance in working with a child who is at an emotional developmental age under age three for a typical child. By using the five phases of educational treatment Dr. Nielsen outlines in this book, we can help the child grow emotionally. When the child reaches the emotional age of three, then new approaches to learning may be available to him. We can begin to consider incorporating other more traditional ways of teaching into our plans with these children beyond simply learning by doing.

(Originally published in Summer 2005 SeeHear Newsletter)

By Jim Durkel, CCC-SPL/A, Texas School for the Blind and Visually Impaired Outreach (with help from and thanks to Kate Moss (Hurst), TSBVI Outreach)

Abstract: This article defines the difference between formal audiological hearing tests and functional, or informal, hearing tests and describes how information from these assessments can be shared to meet the needs of a child.

Key Words: programming, audiological test, functional hearing, auditory functioning, deaf, deafblind


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The term functional hearing is being used more and more often these days. What does it mean? What is functional hearing and how is functional hearing determined?

Formal audiological tests stand in contrast to “functional” tests of hearing. This is a bit misleading and unfair to standard tests since they can give a great deal of information about the functioning of the auditory system. A better distinction might be formal versus informal. This informal process is a way of gathering information about how students use their hearing to gather information and how they make meaning out of this information in different environments across the day.

Formal Audiological Tests

There are 2 major categories of formal audiological testing: physiological tests and behavioral tests.

Physiological Tests

Physiological tests include auditory brainstem response testing (ABR or BSER), oto acoustic emission audiometry (OAE), and tympanometry. These tests are functional in the truest sense of the word: they describe the neurological or mechanical functioning of the auditory system. They do not involve active participation of the person being tested. Audiologists can hypothesize about how results on these tests will affect an individual’s use of auditory information but there is not an exact one-to-one correspondence between neurological or mechanical function and what an individual can and can not do with his or her hearing.

Behavioral Tests

Behavioral tests require the participation of the individual being tested. The most common behavioral tests involve pure tones. Pure tones are sounds generated by a machine. These sounds are very controlled for their pitch and loudness. Pure tones do not exist in nature. Even individual musical notes are not pure tones. All natural sounds, especially speech, contain a combination of different frequencies (pitch) of varying intensity (loudness). During pure tone testing, audiologists are trying to find an individual’s threshold at various frequencies. Threshold is the intensity level where a sound can just be detected. There is not an exact one-to-one correspondence between auditory thresholds and what an individual can do with her or his hearing, but pure tone testing is important to use as a starting point for predictions and to use as the basis for hearing aid fitting. Procedures very similar to pure tone testing are also necessary for the fitting of cochlear implants, during the procedure known as mapping.

Pure tones can be delivered to the ear either through the air, by using headphones or speakers, or through bone conduction, which involves a special vibrator being placed on the head. Differences in air conduction and bone conduction thresholds give information to audiologists and doctors about what part of the auditory system might be having difficulty.

There is another type of behavioral testing that many students with deafblindness never have administered. Instead of using pure tones, speech is used. Using speech, an audiologist can determine:

a speech detection threshold (how loud speech needs to be for a person to just detect it),a speech reception threshold (how loud a special type of 2-syllable word needs to be before an individual can correctly identify a specific proportion of them), andspeech discrimination (what percentage of words at a fixed loudness an individual can correctly identify).

Unfortunately, the measure that is the most like “the real world”, speech discrimination testing (especially when done in the presence of noise), is also the most difficult. This is because the individual who is being tested needs to be able to repeat words, write words, or point to pictures of words. Speech discrimination testing is very important to good hearing aid fitting and in the on-going adjustment of the speech processor component of a cochlear implant. Many children with significant multiple disabilities are not able to participate in speech discrimination testing.

Again, there is not an exact one-to-one correspondence between these formal audiological tests and every day use of hearing. Then why do these tests?

Both physiological and behavioral tests were designed to give specific information about the auditory system. The conditions under which they are given and the type of input used is carefully controlled so that results of one person’s tests can be compared to another person’s tests. And so that performance on a test one day can be compared to performance on the same test on another day. This gives us the opportunity to talk about the integrity of the auditory system with as little regard to other factors, such as cognitive or physical ability, as possible. The advantage of this is that we can identify where in the auditory system a problem might exist. This has very important medical implications and for this reason alone formal audiological testing should never be replaced with informal testing. The two kinds of testing are complementary.

Formal testing allows for the careful evaluation of hearing aids and the adjustment of cochlear implants. Finally, while pure tone testing done in an audiological test booth is a different listening situation than trying to carry on a conversation in a car, pure tone tests can give a ballpark prediction of the success of that conversation. Physiological and behavioral tests give us a very important starting point.

Listening in the Real World

What is it about “real world” listening situations that make predications from formal tests inexact? There are three factors to consider: the source of the sounds, the environment, and the listener.

Sound Sources

Sound is not simple and speech, the sound we often are most interested in, is the most complex. Speech contains a mix of sound energy at different frequencies and this information changes very rapidly. This mix and these changes allow us to hear the difference between the various vowels and consonants. We then have to assign meaning to the speech sounds we hear. This takes cognitive ability. Finally, to create those sounds ourselves takes motor ability and then auditory ability again as we monitor our own speech.

It is important to understand that being able to detect a sound is a different skill than being able to discriminate a sound. I may be able to hear the presence of a sound because it contains energy in a range my auditory system can handle. But if my auditory system can’t give me the whole picture, if I can’t hear all the energy in that sound, I may not be able to hear how it is different from another sound. Talking over the telephone is an example of this. Telephones do not allow the full range of sound energy to go through. Some high frequency information is taken out so that the telephone can work more quickly. This is why the word “fin” can easily be confused with the word “sin”, or “thin”. You can “hear” (detect) the word but have trouble discriminating (understanding exactly what is heard).

A person with enough speech and language experience, often can “fill in” pieces of what was not heard. For example, someone may call to me from another room and all I can hear is, “Do you have the _og?” Now if I know the other person is trying to light a fire in the fireplace, I will fill in the blank and “hear” log. However, if I have just been petting my German Shepherd, I will probably “hear” dog. This effect of experience and context on hearing is just one reason why formal tests don’t predict use 100%. Experience also helps us interpret other sounds we hear. Before cell phones were common, how many of us knew what those sudden noises coming out of nowhere meant? Why would I pay attention to a doorbell if I grew up in a house that only had a doorknocker? I always think Harley Davidson motorcycles sound like they are broken. This is because they normally sound like my car does when its muffler has fallen off. How many of us think rap music is noise but rock and roll is here to stay?

The Environment

The environment in formal audiological testing is very controlled. Typically, there is little competing visual or tactual information and the room is treated to eliminated noise and echo. Now think of a child’s typical listening environment where there are all kinds of competing sights, sounds, smells, and touches. Some children may get so neurologically “distracted” by what they see that they appear “deaf” in typical listening environments but appear to hear just fine in formal testing environments. On the other hand, it is not uncommon for a listener to use other senses to help support and confirm what was heard. For example, people with Usher syndrome often think their hearing is getting worse when really the hearing loss is stable and it is their visual skills that are declining. These individuals have been using visual information to support their hearing for so long they are unaware of doing so.

The Listener

Finally, there is the listener. Part of the “art” of formal behavioral tests is discovering how to motivate a listener to participate in what is a fairly boring, uninteresting task. The formal testing situation may be so unfamiliar to the child being tested that it is scary. Formal testing may be associated with unpleasant experiences in a doctor’s office. The amount of time allotted for the testing may be too short to allow the child to be comfortable or so long that the child’s participation wanes. The time of day of the testing appointment may not be the time that the child is the most alert. Formal testing often treats the child as if he or she were only a pair of ears and ignores the rest of the child.

The Informal Hearing Assessment Process

The goal of informal hearing process is to:

develop an idea of how the child uses his or her hearing in various environments across the course of the day; andtry to discover what variables support the best use of hearing in order to continuously improve the use of hearing.

During the process, observation will be used to determine what, if any, sounds the child seems to react to and what, if any, meaning the child is getting from auditory information. Observation, of course, is also supported with information from formal hearing tests. Observation also includes setting up situations and seeing how the child responds.

Step 1: General Functioning

The first step of informal hearing assessment is getting an idea of the general functioning of the child.

Does the child show any awareness of any sensory information (visual, tactual, etc.)?How does the child show that awareness?What motor behaviors seem to indicate that the child was aware of and responding to sensory information?

Without this information, you can’t tease out hearing from other factors.

Good questions to ask at this point are:

What does the child do with sensory information?Has the child learned (or can she learn) to associate movement cues with a pleasurable activity?Does the child show anticipation of an event from seeing or touching an object?

Step 2: Responses to Auditory Information

Now you can ask:

Does the child show anticipation or recognition through the use of hearing? That is, does the child anticipate an event when they only hear a sound associated with that event (before they see or touch something associated with the event)?What sounds does the child respond to?

Step 3: Looking for Patterns

At this point, we are looking for patterns of responses. We are trying to find out which sounds under what conditions give the best (easiest to see, most consistent, meaningful to the child) responses.

Is there a difference in performance based on the types of sounds?low pitch vs. high pitchonset vs. cessationsimple vs. complex (for example, one instrument vs. orchestra)rhythmsloud vs. softlong vs. short (duration)Are there any clear preferences?people’s voices (male/female, young/old, familiar/unfamiliar)types of musicmusical instrumentsobjectsIs there a difference in performance in different environments?quiet vs. noisyechocompeting (or supporting) information from other sensesIs there a difference in performance depending on where the sound comes from?in frontbehindrightleftabovebelowHow long after the input does it take for a typical response to occur?Do responses varyacross different environments? (indoors, outdoors, hallways, carpeted room, tiled rooms, etc.)at different times of day?before or after meal time?before or after receiving medication?with the physical position of the child?

Natural observation (doing nothing but watching the child) might not give you all the information you need at this point. Using information from formal hearing tests, you might want to set up some situations to help you observe patterns. For example, the results of formal hearing tests may indicate that the child should be able to hear loud low frequency sounds, like a drumbeat. You then might want to set up a simple turn taking game involving the beating of a drum to see if the child will listen while you beat a drum then take a turn and beat a drum after you stop. If the child can do this, then you might want to try similar games with other sounds that vary by pitch and loudness to see what sounds the child can use and which he or she can’t. Of course, it may take several repetitions of the game, across several days or weeks, before the child learns their role.

Step 4: What Does It Mean to the Child?

The next step is to ask, “How does the child use auditory information?”

At a reflexive, awareness level? Does the child startle to sound but otherwise not pay much attention?At a regulating level? Does sound help the child enter and maintain a quiet and alert biobehavioral state? Are there sounds that send the child into a fussy, agitated state?At a motor level? Does the child turn towards or reach for an object or person making a sound, even if the child can’t see or touch the sound source?At a play level? Does the child enjoy making noise, either with his or her mouth, by activating switches, hitting two objects together, playing musical instruments, etc.At an associative level? Does the child associate a particular sound with a particular event?At a communication level? Does the child recognize any common words, especially his or her name? Does the child try to use any sounds consistently to communicate?

Step 5: Where Do We Go From Here

Gathering this information over time can help guide programming for the child. Information from steps 1-4 should give an emerging picture of what is meaningful to the child. This information should guide our next steps: that is, how do we help the child use a greater and greater variety of auditory information in more and more situations and with better precision and in more and more sophisticated ways. Informal information should be shared with audiologists to help them in the process of deciding how well a hearing aid or cochlear implant is meeting the needs of a particular child and if adjustments need to be made. Information from the informal hearing assessment process can also help guide the formal hearing assessment process by letting the audiologist know typical kinds of responses a particular child might make to various kinds of auditory input.

Resources

There is a book, Every Move Counts, by Jane Korsten (Therapy Skill Builders, 1993) that outlines a process that can be useful for gathering information. Every Move Counts deals with all the senses, not just hearing.

Another soon to be released product that helps look at how a child uses sensory information is the “Sensory Learning Kit”, (Millie Smith, primary author) from American Printing House for the Blind. This product should be available sometime in 2006.

Finally, is “A Process for Identifying Students Who May Be At-Risk for Deafblindness”. This is a collection of information and downloadable forms that can be used to support the gathering of information in an informal way.

Teachers for the deaf and hard of hearing typically have training to help look at auditory functioning in this informal way. They may be a valuable resource in this process.

Originally publishing in the Summer 2005 edition of See/Hear Newsletter.

By Jim Durkel, CCC-SPL/A, Texas School for the Blind and Visually Impaired Outreach (with help from and thanks to Kate Moss, TSBVI Outreach)

Abstract: This article defines the difference between formal audiological hearing tests and functional, or informal, hearing tests and describes how information from these assessments can be shared to meet the needs of a child.

Key Words: programming, audiological test, functional hearing, auditory functioning, deaf, deafblind


The term functional hearing is being used more and more often these days. What does it mean? What is functional hearing and how is functional hearing determined?

Formal audiological tests stand in contrast to “functional” tests of hearing. This is a bit misleading and unfair to standard tests since they can give a great deal of information about the functioning of the auditory system. A better distinction might be formal versus informal. This informal process is a way of gathering information about how students use their hearing to gather information and how they make meaning out of this information in different environments across the day.

Formal Audiological Tests

There are 2 major categories of formal audiological testing: physiological tests and behavioral tests.

Physiological Tests

Physiological tests include auditory brainstem response testing (ABR or BSER), oto acoustic emission audiometry (OAE), and tympanometry. These tests are functional in the truest sense of the word: they describe the neurological or mechanical functioning of the auditory system. They do not involve active participation of the person being tested. Audiologists can hypothesize about how results on these tests will affect an individual’s use of auditory information but there is not an exact one-to-one correspondence between neurological or mechanical function and what an individual can and can not do with his or her hearing.

Behavioral Tests

Behavioral tests require the participation of the individual being tested. The most common behavioral tests involve pure tones. Pure tones are sounds generated by a machine. These sounds are very controlled for their pitch and loudness. Pure tones do not exist in nature. Even individual musical notes are not pure tones. All natural sounds, especially speech, contain a combination of different frequencies (pitch) of varying intensity (loudness). During pure tone testing, audiologists are trying to find an individual’s threshold at various frequencies. Threshold is the intensity level where a sound can just be detected. There is not an exact one-to-one correspondence between auditory thresholds and what an individual can do with her or his hearing, but pure tone testing is important to use as a starting point for predictions and to use as the basis for hearing aid fitting. Procedures very similar to pure tone testing are also necessary for the fitting of cochlear implants, during the procedure known as mapping.

Pure tones can be delivered to the ear either through the air, by using headphones or speakers, or through bone conduction, which involves a special vibrator being placed on the head. Differences in air conduction and bone conduction thresholds give information to audiologists and doctors about what part of the auditory system might be having difficulty.

There is another type of behavioral testing that many students with deafblindness never have administered. Instead of using pure tones, speech is used. Using speech, an audiologist can determine:

  • a speech detection threshold (how loud speech needs to be for a person to just detect it),
  • a speech reception threshold (how loud a special type of 2-syllable word needs to be before an individual can correctly identify a specific proportion of them), and
  • speech discrimination (what percentage of words at a fixed loudness an individual can correctly identify).

Unfortunately, the measure that is the most like “the real world”, speech discrimination testing (especially when done in the presence of noise), is also the most difficult. This is because the individual who is being tested needs to be able to repeat words, write words, or point to pictures of words. Speech discrimination testing is very important to good hearing aid fitting and in the on-going adjustment of the speech processor component of a cochlear implant. Many children with significant multiple disabilities are not able to participate in speech discrimination testing.

Again, there is not an exact one-to-one correspondence between these formal audiological tests and every day use of hearing. Then why do these tests?

Both physiological and behavioral tests were designed to give specific information about the auditory system. The conditions under which they are given and the type of input used is carefully controlled so that results of one person’s tests can be compared to another person’s tests. And so that performance on a test one day can be compared to performance on the same test on another day. This gives us the opportunity to talk about the integrity of the auditory system with as little regard to other factors, such as cognitive or physical ability, as possible. The advantage of this is that we can identify where in the auditory system a problem might exist. This has very important medical implications and for this reason alone formal audiological testing should never be replaced with informal testing. The two kinds of testing are complementary.

Formal testing allows for the careful evaluation of hearing aids and the adjustment of cochlear implants. Finally, while pure tone testing done in an audiological test booth is a different listening situation than trying to carry on a conversation in a car, pure tone tests can give a ballpark prediction of the success of that conversation. Physiological and behavioral tests give us a very important starting point.

Listening in the Real World

What is it about “real world” listening situations that make predications from formal tests inexact? There are three factors to consider: the source of the sounds, the environment, and the listener.

Sound Sources

Sound is not simple and speech, the sound we often are most interested in, is the most complex. Speech contains a mix of sound energy at different frequencies and this information changes very rapidly. This mix and these changes allow us to hear the difference between the various vowels and consonants. We then have to assign meaning to the speech sounds we hear. This takes cognitive ability. Finally, to create those sounds ourselves takes motor ability and then auditory ability again as we monitor our own speech.

It is important to understand that being able to detect a sound is a different skill than being able to discriminate a sound. I may be able to hear the presence of a sound because it contains energy in a range my auditory system can handle. But if my auditory system can’t give me the whole picture, if I can’t hear all the energy in that sound, I may not be able to hear how it is different from another sound. Talking over the telephone is an example of this. Telephones do not allow the full range of sound energy to go through. Some high frequency information is taken out so that the telephone can work more quickly. This is why the word “fin” can easily be confused with the word “sin”, or “thin”. You can “hear” (detect) the word but have trouble discriminating (understanding exactly what is heard).

A person with enough speech and language experience, often can “fill in” pieces of what was not heard. For example, someone may call to me from another room and all I can hear is, “Do you have the _og?” Now if I know the other person is trying to light a fire in the fireplace, I will fill in the blank and “hear” log. However, if I have just been petting my German Shepherd, I will probably “hear” dog. This effect of experience and context on hearing is just one reason why formal tests don’t predict use 100%. Experience also helps us interpret other sounds we hear. Before cell phones were common, how many of us knew what those sudden noises coming out of nowhere meant? Why would I pay attention to a doorbell if I grew up in a house that only had a doorknocker? I always think Harley Davidson motorcycles sound like they are broken. This is because they normally sound like my car does when its muffler has fallen off. How many of us think rap music is noise but rock and roll is here to stay?

The Environment

The environment in formal audiological testing is very controlled. Typically, there is little competing visual or tactual information and the room is treated to eliminated noise and echo. Now think of a child’s typical listening environment where there are all kinds of competing sights, sounds, smells, and touches. Some children may get so neurologically “distracted” by what they see that they appear “deaf” in typical listening environments but appear to hear just fine in formal testing environments. On the other hand, it is not uncommon for a listener to use other senses to help support and confirm what was heard. For example, people with Usher syndrome often think their hearing is getting worse when really the hearing loss is stable and it is their visual skills that are declining. These individuals have been using visual information to support their hearing for so long they are unaware of doing so.

The Listener

Finally, there is the listener. Part of the “art” of formal behavioral tests is discovering how to motivate a listener to participate in what is a fairly boring, uninteresting task. The formal testing situation may be so unfamiliar to the child being tested that it is scary. Formal testing may be associated with unpleasant experiences in a doctor’s office. The amount of time allotted for the testing may be too short to allow the child to be comfortable or so long that the child’s participation wanes. The time of day of the testing appointment may not be the time that the child is the most alert. Formal testing often treats the child as if he or she were only a pair of ears and ignores the rest of the child.

The Informal Hearing Assessment Process

The goal of informal hearing process is to:

  • develop an idea of how the child uses his or her hearing in various environments across the course of the day; and
  • try to discover what variables support the best use of hearing in order to continuously improve the use of hearing.

During the process, observation will be used to determine what, if any, sounds the child seems to react to and what, if any, meaning the child is getting from auditory information. Observation, of course, is also supported with information from formal hearing tests. Observation also includes setting up situations and seeing how the child responds.

Step 1: General Functioning

The first step of informal hearing assessment is getting an idea of the general functioning of the child.

  • Does the child show any awareness of any sensory information (visual, tactual, etc.)?
  • How does the child show that awareness?
  • What motor behaviors seem to indicate that the child was aware of and responding to sensory information?

Without this information, you can’t tease out hearing from other factors.

Good questions to ask at this point are:

  • What does the child do with sensory information?
  • Has the child learned (or can she learn) to associate movement cues with a pleasurable activity?
  • Does the child show anticipation of an event from seeing or touching an object?

Step 2: Responses to Auditory Information

Now you can ask:

  • Does the child show anticipation or recognition through the use of hearing? That is, does the child anticipate an event when they only hear a sound associated with that event (before they see or touch something associated with the event)?
  • What sounds does the child respond to?

Step 3: Looking for Patterns

At this point, we are looking for patterns of responses. We are trying to find out which sounds under what conditions give the best (easiest to see, most consistent, meaningful to the child) responses.

  1. Is there a difference in performance based on the types of sounds?
    • low pitch vs. high pitch
    • onset vs. cessation
    • simple vs. complex (for example, one instrument vs. orchestra)
    • rhythms
    • loud vs. soft
    • long vs. short (duration)
  2. Are there any clear preferences?
    • people’s voices (male/female, young/old, familiar/unfamiliar)
    • types of music
    • musical instruments
    • objects
  3. Is there a difference in performance in different environments?
    • quiet vs. noisy
    • echo
    • competing (or supporting) information from other senses
  4. Is there a difference in performance depending on where the sound comes from?
    • in front
    • behind
    • right
    • left
    • above
    • below
  5. How long after the input does it take for a typical response to occur?
  6. Do responses vary
    • across different environments? (indoors, outdoors, hallways, carpeted room, tiled rooms, etc.)
    • at different times of day?
    • before or after meal time?
    • before or after receiving medication?
    • with the physical position of the child?

Natural observation (doing nothing but watching the child) might not give you all the information you need at this point. Using information from formal hearing tests, you might want to set up some situations to help you observe patterns. For example, the results of formal hearing tests may indicate that the child should be able to hear loud low frequency sounds, like a drumbeat. You then might want to set up a simple turn taking game involving the beating of a drum to see if the child will listen while you beat a drum then take a turn and beat a drum after you stop. If the child can do this, then you might want to try similar games with other sounds that vary by pitch and loudness to see what sounds the child can use and which he or she can’t. Of course, it may take several repetitions of the game, across several days or weeks, before the child learns their role.

Step 4: What Does It Mean to the Child?

The next step is to ask, “How does the child use auditory information?”

  • At a reflexive, awareness level? Does the child startle to sound but otherwise not pay much attention?
  • At a regulating level? Does sound help the child enter and maintain a quiet and alert biobehavioral state? Are there sounds that send the child into a fussy, agitated state?
  • At a motor level? Does the child turn towards or reach for an object or person making a sound, even if the child can’t see or touch the sound source?
  • At a play level? Does the child enjoy making noise, either with his or her mouth, by activating switches, hitting two objects together, playing musical instruments, etc.
  • At an associative level? Does the child associate a particular sound with a particular event?
  • At a communication level? Does the child recognize any common words, especially his or her name? Does the child try to use any sounds consistently to communicate?

Step 5: Where Do We Go From Here

Gathering this information over time can help guide programming for the child. Information from steps 1-4 should give an emerging picture of what is meaningful to the child. This information should guide our next steps: that is, how do we help the child use a greater and greater variety of auditory information in more and more situations and with better precision and in more and more sophisticated ways. Informal information should be shared with audiologists to help them in the process of deciding how well a hearing aid or cochlear implant is meeting the needs of a particular child and if adjustments need to be made. Information from the informal hearing assessment process can also help guide the formal hearing assessment process by letting the audiologist know typical kinds of responses a particular child might make to various kinds of auditory input.

Resources

There is a book, Every Move Counts, by Jane Korsten (Therapy Skill Builders, 1993) that outlines a process that can be useful for gathering information. Every Move Counts deals with all the senses, not just hearing.

Another soon to be released product that helps look at how a child uses sensory information is the “Sensory Learning Kit”, (Millie Smith, primary author) from American Printing House for the Blind. This product should be available sometime in 2006.

Finally, is “A Process for Identifying Students Who May Be At-Risk for Deafblindness”. This is a collection of information and downloadable forms that can be used to support the gathering of information in an informal way.

Teachers for the deaf and hard of hearing typically have training to help look at auditory functioning in this informal way. They may be a valuable resource in this process.

 

This magnifier unit is designed to pique the interest of the kindergarten-junior high student with low vision, teach concepts which may be incomplete due to the sensory deficit, and provide extended activities in an effort to challenge children and expand the transfer of magnifier skills.  The magnifier(s) recommended for these activities include any combination of a hand held magnifier (preferred), stand magnifier, or microscopic lenses.  The ultimate goal of magnifier use is increase the student’s access to the wide array of visual materials, including objects, pictures, and print.

Fun with Magnifiers is divided into 8 stand-alone units that can be taught by teachers of students with visual impairments, classroom teachers, and/or parents.  Since some children are sensitive to being the only child using a magnifier in their classrooms, these units might be more successful if arranged in a learning center for all classmates to use.  Other alternatives might involve having the student present a completed unit project of his/her choice to the class or to a class of younger students during a science lesson.  Each unit includes optional activities that are designed to provide enrichment and higher order cognitive skills.  Please note that some of the units involve using print books/materials to help classify objects.  The intention of using actual books (rather than a website) is to provide further experience with print size, contrast, color, and photos.  

Download Fun with Magnifiers (Word or PDF)

Chris Tabb, Statewide Orientation and Mobility Consultant

512.206.9226

 (Note: This document was intended for all members of a student’s IEP Team. The pronouns are intentionally varied; “student” will be used at times and “child” will be used at others. Though it may appear that one section is intended for a parent and another for an education professional, all strategies can be implemented both in the home and the educational setting.)

Encourage Purposeful Movement:

Having times in the day that allow the student to practice moving independently will help them to develop skills that can be generalized to new areas and longer duration travel. Purposeful movement can be as simple as bringing a hand to a preferred toy that is next to or even on the body. When there are structures in place to support and encourage this movement at home and at school, the motivation to travel and begin moving with purpose will increase. Examples of establishing a supportive environment for purposeful movement include having a location for preferred toys that the student can access at any time and reliably find favored objects there. This strategy can be enhanced or extended by using tactile markers that show certain areas are “their” areas, such as marking a cubby and coat hook with a texture or small object that will help them to know where their own things are at school. The marker can also include a braille label so they begin develop the concept that braille is associated with names of things. Other places where it would be helpful to include “their” symbol or tactile marker are their chair, desk, door to their room at home, etc. With an expectation of predictability and control in the environment, the student is more likely to initiate travel on their own and also begin developing a sense of self-mastery and confidence for travel as they receive their own, earned reward when they reach their favored objects or destination of choice. This natural reinforcement perpetuates the motivation to move.

Another helpful strategy is to plan some “free exploration” time into the student’s day, just a brief period (e.g. 10 to 20 minutes) where they can practice navigating in the school and or home environment (even outdoors when the terrain and other conditions are safe for doing so). This gives an appropriate and educationally beneficial opportunity to satisfy and encourage curiosities they may have about their environments. If they become disoriented or find something unexpectedly, it becomes an excellent opportunity to develop problem solving skills. An example might be finding a hallway in the school that allows them to take a new route to class, or finding a library cart in the hallway and learning how to navigate around it safely. During this time, an adult is nearby to assist as necessary, but the student is deciding what to do and where to go, rather than the adult providing the agenda and directing their actions.

Developing Sensory Efficiency:

Encouraging the student to become aware of all of the sensory inputs they have the physical ability to attend to in the environment will help them begin nurturing the skills related to sensory efficiency. Remember to include tactile, auditory, kinesthetic, proprioceptive, olfactory, and if there is the ability to receive visual information, then vision as well.

One way to think of the difference between kinesthetic and proprioceptive is how you feel on a hill. When walking up or down a hill, you feel different muscles being used; and, if you are walking up the hill you certainly feel the additional strain and effort needed to ascend the hill. This muscle sensation is kinesthetic. This is a way to tell whether there is an elevation change on a path regardless of vision. Proprioceptive would be the sensation that you feel in your joints, such as in your ankle as you flex forward or backward to be upright while standing on a hill. The same sensation can be recognized while standing on a foam roll, or while leaning on the edge of a step or curb. These are not typically “taught” to children as most children have already recognized they are on a hill with their vision, it is considered incidental learning. When we take the time to deliberately draw attention to these other sensory inputs available to our children, we help them learn tools that they can use to access information about their environment at any time.

When teaching, we will often say “look at this” or “do you see how…”; these visual representations are often the way that adults learned and they convey the information they are teaching to students in the same manner. By thinking about the other senses available to our students we can help them to “visualize” their environments through these other, or additional sensory channels. It might be clapping hands in the gymnasium to hear the echo and then comparing the same clapping sound in the smaller and often more auditorily reflective bathroom; or, listening for the sound change while passing interconnecting hallways in a quiet main hallway. As adults likely learned about the world in a wholly different manner, it may take some additional thought and creativity to introduce sensory exercises, but the dividends returned in independence in the children is tremendous. Once they begin recognizing all the sources of information available to them and continue attending to the sensory information, their ability to visualize (visualized through a variety of sensory channels, such as sound waves that make a picture for sonar) their world continues to develop.

Here are some activity examples to practice:

  1. Localizing sounds, such as identifying the location of dropped object or pointing at a person who is walking and following the sound of their steps.
  2. Aligning with sounds
  3. Walking toward, away from sounds
  4. Walking around sounds to circumnavigate something
  5. Identifying patterns in sounds
  6. Using echoes and reflected sound (passive and active echolocation)
  7. Distinguishing sources of sounds, such as car, lawnmower, airplane
  8. Estimating distance of sound
  9. Estimating direction of sound; is it coming toward or going away from
  10. Understanding when one’s own ability to use sound is impacted by changes within the environment, or within one’s self
  11. Finding other sensory means to verify or confirm what is being received or interpreted through the auditory channel

Tactile could be touching different textures or temperatures. It might be a lesson in feeling the sun on the skin for maintaining alignment along a route and determining direction of travel by knowing the location of the sun.

Olfactory sense can aid orientation and connection with the environment to provide clues for what might be happening in the environment, such as smelling the aroma of a bakery, or recognizing a strong smelling dumpster that you have to walk past every day in the parking lot as you approach the school.

Advancing Concepts:

Rough and smooth, inside and outside, more and less, fast and slow, these are all concepts that can be developed across educational settings and in the home. It is best to present these in natural settings wherever possible such as finding the rough brick next to the smooth glass in the hallway while transitioning to an activity. The more concepts that are developed and used in varied places and settings, the greater the power and connection of the concepts. Those that are originally introduced at a desk activity might later be used when matching textures of clothing, discerning landmarks, etc.

Often concepts that would be learned through exploration by children who are visual learners must be taught more deliberately to students who are blind and visually impaired as they may not otherwise recognize learning opportunities that are in the environment. This might include feeling the glass windows and discussing the qualities of glass; it holds temperature and is hot in the summer and cold in the winter, it is very often smooth and hard yet is makes a different sound than either wood, metal, or plastic. Each of these materials can be explored, and new concepts related to their qualities introduced, compared, and contrasted.

Consistency in Learning Environments:

Regular repetition and having all Team members working on the same concepts and skills, with the same language for these, will facilitate the acquisition of the concepts and skills. Keeping the number of new concepts and skills to a minimum level that is represented and reinforced in multiple areas across settings (i.e. in the classroom, with each related service, and at home) keeps the new information at the center of attention and learning and allows for a maximal number of occurrences to connect the concepts with different situations and environments. The more the concepts are experienced the quicker the acquisition, and the more they are encouraged the stronger their resiliency and meaning.

Routines in the student’s day provide natural repetition and opportunities to learn new concepts and practice others that have already been introduced. Ensuring that the child has the same routine presentation will help them achieve increasing levels of independence within the activities of the routine; photographs with descriptions of the steps for the routine and its set up can be laminated and placed near the routine area so that whoever is working with the student will set it up the same way. This allows the student to focus on learning the routine itself and any concepts that are being deliberately included rather than having their attention distracted by differences in setup or preferences of the adult they are working with.

An example for the early stages of purposeful movement is an activity mat or rug, where toys are placed in consistent locations (e.g. the musical toy always goes in one corner, the vibrating toy diagonal to the first, a plush toy in the third, and a squeeze toy in the final corner). With the toys being placed in consistent locations, regardless of the adult the student is working with, they will be more inclined to explore, as they will be able to predict where their favorites will be, and then successfully achieve getting what they want independently. These skills can then be generalized to larger areas, such as travel within the classroom, the school building, and ultimately the school area, including the outdoor recess area.

Value Sharing:

Interactive games and value-sharing-time, where the student is met at their own place and level of interest, is the best place to begin developing rapport. This rapport development is a foundation for later expansion of skills when students are presented with possible fear at learning new skills (e.g. entering loud environments, crossing streets, etc.) and can rely on the trust they have developed with the adult they are working with.

As adults we often forget to be truly listening to the student, especially when the child is nonverbal. We need to remember to join them in their moment whenever possible rather than starting by trying to coax them into the moment we would like them to be having. We are much more apt to get their “buy in” to the activity we are proposing for them to do if we have first met them where they are and shared what they are involved in. In this way, we are already connected and communicating before offering what we would like them to consider doing.

Motivators and Communication:

Keep track of what is motivating and aversive to your child. These items or sensory experiences can then be used as “carrots” or motivators for other activities if they are positive motivators for your child; or, if they are aversive stimuli they can be helpful for demonstrating choice and conceptual understanding with preferences. This can be during a choice sequence with a calendar system, etc. to verify that an item that is expected to be viewed as aversive by the child will not be chosen, and a preferred item will be selected. Once these items are consistently communicated using the actual object, they can then be transitioned to a symbol or piece of the item, such as the chain from the swing to represent the activity of swinging. Eventually the symbol will become even more abstract, such as one link of the chain or even a raised line drawing, just as print and braille words are an abstraction of the physical and concrete things they represent.

Once the child is demonstrating the ability to use symbols they can be used to communicate planned activities, make choices, and express preferences. They can also be used to create functional routines and reasons for practicing routes, such as going from the classroom to the playground to reach the swing, or visiting the office to deliver a daily attendance record as part of a job routine. These activities can then be reviewed with the symbols to “talk” and communicate about the experiences of the activity; this further develops concepts, literacy, and a sense of understanding and control within the environment as well as the social benefit of sharing about an event.

Experience is the Best Teacher:

Let safe accidents happen. We learn from mistakes and if we prevent a child from having accidents occur, we are depriving them of the opportunity to learn from the mistake or accident. If a child is walking on the playground and tumbles on the ground due to a change in elevation, they learn what it is to fall, they learn how to get up, and with enough occurrences they learn to shift their balance and prevent themselves from falling. It has to be lived, to be learned. Certainly there are some accidents that are beyond the scope of safety, such as the fall from the top of the swing set or stepping into a street with moving vehicles. These are indeed areas the adult should intervene. But, if an accident will not result in bodily harm it can be an opportunity for learning to occur. Sometimes we pre-teach a skill to a child, such as a protective technique that includes bringing the hand up and in front of the head to prevent bumping into a table when bending down; generally the skill is only truly acquired when the child bumps the table with their head and is able to make the connection within themselves that bringing the hand up before bending down could prevent the bump in the future. If as adults we always provide the prompt or cue to implement the protective technique for them to avoid bumping their head, we are interfering with the natural learning process. There are certainly times we have to help the child to process the event and connect the technique with the desired outcome, but eventually they must learn to self-initiate the technique for it to be effective and having the “safe” accident happen is truly the best teacher.

Celebrate the Successes:

There are many “milestones” that are printed in books but it is important to keep track of personal “milestones”. The first time your child rolls over and is able to get to a toy, it is a milestone. Reaching an arm out to touch something that draws their attention is a milestone; it warrants celebration and a note in a family journal. These celebrations of successes in life are at least twofold. They help us track the succession of accomplishments that your child has and they help us to see how far they have come. Sometimes, in the day to day challenges we forget how far we have come, how many challenges we have in fact overcome. The awareness of growth helps us to have confidence that we will continue to move toward greater levels of independence and to remember “the best is yet to come!” 

By Kate Moss, Education Specialist, Texas Deafblind Outreach and Holly Cooper, Technology Specialist, TSBVI Visually Impaired Outreach

For many blind and deafblind children, participation in paper and pencil types of tasks that are part of typical classroom instruction can be accomplished with a number of modifications. Other children with blindness or deafblindness, because of their additional language or cognitive challenges, do not benefit at all from paper and pencil types of activities. Having opportunities to learn in a way that includes the use of other sensory channels such as taste, touch, and smell is not only more motivating, but often more beneficial. All children with blindness and deafblindness benefit greatly from experiential learning situations, those that involve activities where the child can learn by doing. Food preparation is a learning activity that is a great idea for most classrooms and grade levels serving children with blindness and deafblindness.

A Great Recipe for Instruction

It is not hard to think of ways to infuse a variety of skills into cooking activities. Here are just a few.

Language, Concept Development, and Communication Skills

Food is a great topic of conversation for most of us. Children with blindness and deafblindness can naturally use objects to request or offer. Learning the names of favorite food items is highly motivating and very functional. Cooking is a natural way to help the child learn language and concepts about different textures (smooth, hard, chewy), temperatures (hot, cold, warm, cool), flavors and odors (sweet, sour, salty, spicy, burnt). The student can learn to identify and categorize items based on these qualities as they learn through participation in the cooking activity.

Hearing, Vision, Fine and Gross Motor Skills Development

Developing hearing, vision, fine and gross motor skills are critical to all children. Cooking is a wonderful way to work on all these skills within a single activity. Children can walk or push a cart through stores to shop. The child must use vision to look for specific items, orient to cooking materials, and read a recipe. Learning to listen is important for all students with visual impairments. Cooking activities provide many opportunities to practice listening skills such as learning to listen for the cashier to ask for money or to listen to a recipe on tape. The students can exercise muscles to reach and lift, clean a table, or wash dishes. Fine motor skills are needed to open and close, to stir, knead, cut and shape, to locate and put away materials, and to clean up.

Orientation and Mobility Skills

Whether or not a child is able to travel to a store to buy supplies before completing a cooking activity, it is easy to infuse O&M skills into routines. Learning skills related to organizing the work space, learning positions of ingredients relative to bowls and blenders is a great way to work on positional concepts. Navigating the room to carry items to the refrigerator, stove, or sink is a natural way to learn to how to follow a route or navigate around obstacles.

Literacy and Math Skills

In the area of math you can learn to count and measure, identify money, count and make change. You can talk about fractions, weights, and sizes. You can learn to read a recipe using words, Braille, or pictures. You can write about the cooking activity you have completed and print a sign to advertise the sale of food items you have made. You can look for particular brands of food in the grocery store or read the signs to help you find the aisle where a specific product is located.

Instructional Routines

Instructional routines are one educational strategy to use with students who have additional disabilities or deafblindness. A clearly defined activity helps build memory, provides a structure for teaching concepts and skills, and helps the child develop an understanding of whole events involving a sequence of steps enabling him/her to participate in the event. Cooking is a perfect activity to develop into an instructional routine. Children may participate in every step of the cooking routine or assist with one or two steps. Cooking may be done as a group activity routine or as an independent activity. A student can complete cooking routines that make food "from scratch" or use frozen or precooked items, depending on his/her skill and interest level. Cooking is also an important independent living skill that many individuals will need or use in their adult lives.

Modifications

One key to making a cooking activity work for a student with blindness or deafblindness is finding the appropriate modifications. These include recipes on Braille, in large print, picture or tactual symbols, or audio cassette. Using Braille labels, rubber bands or tactual symbols to label products makes them easier for the individual to identify. Appropriate technology in the form of switches, note taking devices, and so forth may also be needed. Placing hard materials in easy to open containers, using nonskid mats, or specially adapted devices for cooking may be necessary for some students. There are a variety of ways to modify almost any cooking activity so that just about every student can participate to some degree.

Below is a list showing typical jobs that might take place in a cooking activity, skills that might be worked on at different levels, and possible modifications that may be needed for the blind or deafblind student.

Student's Job - Collecting Ingredients

Skills That Might Be Worked On: reading a recipe; learning about temperatures; learning concepts and vocabulary related to ingredients; shopping and paying for items; finding items in kitchen or cooking area; carrying items to work area; traveling around the store, kitchen or classroom; organizing materials in a work space and orienting to them.

Possible Modifications: use object symbols, Braille, large print, pictures to make recipe accessible or to make a shopping list; use travel cane to navigate store; use pictures, tactual marker/Braille labels to identify ingredients or location of ingredients; use a basket or cart to help transport ingredients and other cooking materials; use communication notebook or cards to assist in communication with grocery clerk.

Student's Job - Measuring Ingredients

Skills That Might Be Worked On: learning concepts/vocabulary related to measuring (scooping, pouring, measuring, fractions); counting skills (number of spoons, cups); organizing materials in a work space and orienting to them.

Possible Modifications: Use hand-under-hand techniques to assist with pouring, scooping; measuring; Use tray, mats, other surfaces to identify work space; Use a slotted box to organize and sort ingredients into a sequence; Match items to pictures/object symbols in recipe to count using one-to-one correspondence; Use measuring spoons, cups that are specially adapted for visually impaired such as measuring cups and spoons with adjusting level guides or a liquid indicator.

Student's Job - Chopping, Grating or Cutting Ingredients

Skills That Might Be Worked On: learning concepts and words related to preparing ingredients (cut, chop, grate, slice); using a pushing motion to activate a hand chopper; holding hand chopper steady while activating with other hand; holding a knife and using safe cutting technique; activating a food processor with a switch.

Possible Modifications: use hand-under-hand techniques to assist with cutting, grating, chopping; use duct tape to secure hand held chopper to table or assist the student by holding base of chopper; use an adaptive switch to activate food processor; use color-contrasted board for chopping or slicing; use easy grip knife for cutting.

Student's Job - Mixing Ingredients

Skills That Might Be Worked On: learning words and concepts related to blending ingredients such as stir, sift, toss, add; following a left to right sequence using words, pictures, or object symbols; using a hand-held mixer; activating a food processor to knead or mix) using a switch; stirring with a spoon or using hands to mix.

Possible Modifications: use a slotted box to sequence ingredients and work from left to right; use a sequence of objects on a strip that can be removed as that step is completed; use mixer that is on a stand; use switch to activate food processor; use hand-under-hand technique to model mixing motions.

Student's Job - Shaping dough

Skills That Might Be Worked On: learning words and concepts related to shapes and shaping dough; using hands/fingers to roll, pat, fold, cut.

Possible Modifications: use hand-under-hand technique to model shaping dough.

Student's Jobs - Preparing Pans and Cooking

Skills That Might Be Worked On: learning words and concepts related to preparing pans, using ovens or the refrigerator such as grease, flour, hot, etc.; using hands/fingers to grease or activate spray top on Pam/cooking oil; turning on and setting oven; learning safety techniques for using oven and handling hot pans.

Possible Modifications: use hand-under-hand technique to model spraying motion; use a pump-type squirt bottle instead of aerosol type can; use oven mitts instead of pot holder; use a rack jack device to reach the pan out of the oven.

Student's Job - Cleaning up

Skills That Might Be Worked On: learning language and concepts related to cleaning such as empty, wash, dry, etc.; carrying dirty dishes to sink; using hands to explore surface to determine if it is clean or dirty, to hold a sponge or cloth to wipe off cooking area; holding and sweeping with a broom or vacuum; washing, rinsing, drying dishes; returning items to correct location (may involve locating Braille, print or picture card on cabinet, shelf, etc.).

Possible Modifications: use hand-under-hand technique to model washing, rinsing, drying dishes, sweeping with a broom, or vacuuming; use tactual, print, Braille labels to mark cabinets, shelves, etc.

Student's Job - Sharing or Selling Food Items

Skills That Might Be Worked On: learning language and concepts related to selling or sharing food items such as buy, want, give, food names, money concepts; writing advertisements or product labels; bagging, boxing or sacking items for sale or to share; selling products and collecting money; using travel skills to deliver products ; Interacting with customers to ask what they want and to complete sale; sharing food items with friends, family; or pets; using communication strategies to ask and offer; learning math skills needed to handle money and make change; learning how to use an adding machine, cash register, etc.; learning how to figure cost vs. profit; budgeting profits to pay for special item or event.

Possible Modifications: use picture, print, Braille or tactual markers to label items for sale; use jig to hold bag sack open or to help student fold box to put food item inside; use cart to carry items around for delivery; use talking or large print calculators, or cash registers; use communication cards and books to facilitate interaction with others.

Issues and Solutions Related to Cooking Activities

The child who is tube fed

As beneficial as cooking activities are for many of our students, some students who have issues with feeding often seem to be left out of these activities, because they cannot consume food orally. Parents and teachers sometimes think they can't do cooking activities with their child or student because the he or she doesn't eat like a typical child. But any child can participate in cooking activities.

A child who is transitioning towards getting off tube-feedings may benefit greatly from exposure to food in a way that does not put pressure on him/her to take food orally. It is certainly less threatening to lick off your own finger that accidentally got dipped in the instant pudding than it is to have someone try to feed you pudding from a spoon that makes you gag. Having exposure to the textures, smells and tastes of food in this incidental way may make work the OT does on actual oral feeding much easier since the child has more familiarity with the food items.

The child who is severely disabled

Another benefit of cooking, even if the child will not be eating it, is that he or she can prepare something to offer to his or her peers. This gives opportunities to practice communication skills such as asking and offering as he/she assists with snack time. Preparing food to share also gives the child an opportunity to do something for others, an experience not always available to the severely disabled child.

What about hygiene?

An issue for some parents and teachers related to cooking is the issue of hygiene. Children who have problems controlling saliva or who tend to mouth things may not need to be preparing food for other humans to consume. One way to deal with this issue is have the student prepare something just for himself. Another way around that concern is to make food that is meant for pets to eat.

Cooking With Assistive Technology

Switch-activated blenders

Cooking is also a great activity for kids who need to have opportunities to learn to use switches or to expand the variety of routines in which they are able to participate. Students who have significant motor impairments and are not able to independently pour, stir, shake or hold tools needed in cooking can be active participants using simple assistive technology. Many teachers and parents are familiar with using battery operated toys with switches to give students with motor impairments recreation and leisure time activities which they can do independently or in a turn taking setting with a peer. It is just as easy to use the same or similar switches with a special power transformer called the PowerLink from Ablenet, Inc.

To adapt an activity using an electrical appliance for a switch user, prepare the setting in advance by placing the electrical appliance in a place that is easy to see and within reach of the participating student. Plug the appliance into the PowerLink; then plug the PowerLink into the electrical outlet on the wall. Plug a switch into the switch jack that corresponds to the power outlet the appliance is plugged into, then turn the appliance power switch to the on position. When the switch is activated, the appliance will run.

Using a blender with a switch is an easy way to make snacks and drinks for students. The blender running makes lots of noise and vibration, and the liquid inside swirls around. It's a high sensory load, which can be especially desirable for a student with multiple sensory impairments. The noise and vibration can be dampened down a bit by setting the blender on a placemat or other padding if it is too startling for the student. It's also a relatively safe appliance since there are no exposed blades or beaters. Even items that are normally stirred using a mixer can sometimes be mixed with a blender to reduce the mess and safety risks. The blender is a good way to make drinks, smoothies, puddings and ice cream shakes that are easy to consume for students who have difficulty chewing or have problems tolerating texture in their food. Drinks like frozen juices or chocolate milk, or soft foods like jello and pudding which only need stirring with a spoon can be mixed with a blender to give students who cannot independently hold a spoon or stir a chance to participate.

Switch-activated stand-mounted mixers

Stand mounted electric mixers such as those made by Kitchen Aid are also great for using with switches, because they are stable and do not require being held. Liquids and solid ingredients can be added to the bowl, and the mixer activated with a switch and PowerLink. A mixer is a good appliance for making cakes and cookies, even if they are from a mix. Whipped cream can also be made this way.

Setting up a classroom kitchen

If you are a classroom teacher with just an ordinary classroom set up and no kitchen appliances, I would recommend that you start by buying a toaster oven that is as big and as good a quality as you can afford.

Microwaves are good for some things, but for cooking baked goods, they are almost universally dismal failures. Baking cupcakes or cookies is an activity that can be done at school, even if you do not have an oven in your classroom. There are a lot of good recipes you can make by dividing the recipe in half and making it in a toaster oven.

You should also invest in a blender. It doesn't have to be big or even really good quality. If you have students who are tube fed, you should already have a small refrigerator provided by the school district to store the student's food in, and you can use this for your cooking ingredients. If you have a choice, get one large enough to have some freezer space so you can make Popsicles and store ice cream.

With these appliances and a PowerLink with switches you can make a variety of foods and snacks. If you need money to purchase this equipment, try selling popcorn, dog biscuits or cookies to teachers and students in the school to generate funds for your classroom needs. You might be able to get a family member, school staff member or your PTO/PTA to donate kitchen items. Garage sales, thrift stores, or "wholesale clubs" such as Sam's or Price Club often have deals for limited pocket books.

Recipes for Success

Dining Alone

There are any number of good, simple recipes that can be made for one individual. Here are two or our favorites.

"Aggression Cookies"

1 cup oatmeal,

3/4 cup flour,

1/2 cup brown sugar,

1/2 stick margarine,

1 teaspoon baking powder

Mix all ingredients by hand. Form into a ball and then flatten with your hands by patting on it. Fold dough over and repeat several times. Then divide into 3 or 4 balls and flatten each one on to an ungreased cookie sheet by patting. Bake at 350 until they're done (about 10 minutes). This is a nice recipe because it makes just enough for one, so the cook eats what he/she makes. It also involves a lot of banging with your hands, which is a nice way to take turns and work out your frustrations at the same time.

"Princess Sandwich"

Slice of bread or bagel

Whipped cream cheese

Fruit Jelly

Toast bread or bagel in a toaster oven. Put softened whipped cream cheese and jelly in separate cake decorating tubes and let the child help squeeze on cream cheese and jelly designs. Cut into strips or triangles and serve.

Animal Snackers

There are a variety of recipes for how to make treats for all types of animals that can be found in books and on websites. One very nice website for some of these recipes is the Recipe Goldmine, which can be found at http://www.recipegoldmine.com Here are several great recipes and some ideas for how to include them in cooking activities at home or school.

"Basic Dog Treats" (from Recipe Goldmine)

1 3/4 C. whole wheat flour

1 1/4 C. oatmeal

1 1/2 T. vegetable oil

1 C. warm water

Options: 1/3 C. finely grated cheese,1/4 C. peanut butter

Mix the dry ingredients together. Then mix the wet ingredients together. Blend both mixtures until a firm dough is achieved. Shape dough into an oblong roll, wrap in plastic wrap, and chill for 1 hour. Preheat oven to 300ºF. Lightly grease sheet pan. Slice roll into 1/4-inch slices, place on sheet pan and bake for about 1 hour or until treats are done, checking after 45 minutes, and then every 5 minutes thereafter. Let them cool before giving to your best friend.

"Horsey Cookies" (from Recipe Goldmine)

1 C. uncooked oats

1 C. flour

1 C. shredded carrots

1 tsp. salt

1 tsp. granulated sugar

2 tsp. vegetable oil

1/4 C. molasses

Mix ingredients in bowl as listed. Make little balls and place on cookie sheet which has been sprayed with oil or Pam. Bake at 350ºF for 15 minutes, or until golden brown. Take several along to your next hippotherapy session or share them with the local feed store as a give away for their customers buying horse feed.

"Bird Bread" (from Recipe Goldmine - Source: Bird Watcher's Digest)

2 C. melted peanut butter, bacon grease, meat grease or other fat

2 C. cornmeal or stale dry cereal blended into crumbs

Warm water

2 to 3 C. wild birdseed

Raisins, nutmeats or chopped peanuts

Slowly melt peanut butter, grease or fat over low heat. Add cornmeal or stale cereal crumbs. Slowly add enough warm water to make a stiff dough, then add birdseed and raisins, nut meats or chopped peanuts. Pack mixture into small foil pans or a large flat pan and refrigerate overnight. Cut into pieces for tying onto tree branches. Spend time watching the different birds that come to feed and learning about the life cycle of birds.

Blender Delights

"Gazpacho"

12 oz can tomato juice or V8

1 Zucchini

1 Green bell pepper - small

1 Onion - small (optional)

1 Cucumber

1 Tomato - large

1 Garlic clove (optional)

1/4 Teaspoon chili powder

4 Tablespoons olive oil

You can prepare in advance by cutting ingredients into large pieces, so students can eat some or taste small bits while they prepare the gazpacho. Pour tomato juice in blender. Add about half of the vegetables. Blend. Add the other half, blend more. Add all remaining ingredients. This is traditionally served as a soup, but I would serve it in a cup for students to drink. This is a nice recipe for kids to make to serve mom and dad at home.

"Yogurt Popsicles"

8 oz plain yogurt

8 oz any kind of fruit juice or

8 oz frozen fruit

Put all ingredients in a blender. Blend well. Pour or ladle into Popsicle molds or paper cups with spoons Popsicle sticks inserted in the middle. Freeze till firm. Sell at an outdoor stand or simply eat them up.

"Fruit Smoothie"

1 medium banana, sliced and frozen

6 strawberries, frozen

2 Tbs. frozen orange juice concentrate

1 cup milk (may be soy milk or yogurt)

In blender, combine all ingredients and blend until smooth and creamy. Serve in margarita glasses with umbrellas and straws.

"Berry Shake"

1/2 cup yogurt or rice milk

1 tsp. sugar or honey

1/4 tsp. vanilla extract

1 generous cup of chopped strawberries, blueberries, or mixed berries (you may use frozen fruit)

Blend all ingredients in blender. Serve in soda fountain glasses and garnish with a strawberry.

"Chocolate Peanut Butter Shake"

1 cup chocolate milk, (nondairy "milks" such as soy or rice milk may be used)

1 small banana, sliced and frozen

2 Tbs. smooth peanut butter

In blender, combine all ingredients. Blend until smooth. The kind of treat to make Elvis take notice.

Tasty Resources

There are so many things that can be taught through cooking activities. Cooking activities are also a natural activity for families to do together or for kids to do with their peers. Check out some of the simpler recipes available in children's cookbooks that can be found at any book store, your local library or on the internet. Then, get out in the kitchen and start rattling those pots and pans.

Recipe Resources

There are some really helpful books for teachers and parents that can give you some good ideas of cooking activities and recipes to do with students. Some of these have easy to make recipes, some have foods that are especially appealing to students with special needs.

Feed Me! I'm Yours, 1974, Vicki Lansky, Meadowbrook press.
This is mainly a cookbook for baby food, but look toward the back for seasonal snacks, edible playdoughs, Popsicles and juices
Sugar Free Toddlers: Over 100 Recipes, 1991, Susan Watson, Williamson Publishing.
Mainly a cookbook for toddler food, not always simple recipes with only a few ingredients, but it does include some great snacks made from fruit, fruit juice, smoothies, gelatin snacks, puddings and spreads.
Super Snacks, 1992, Jean Warren from Totline, a division of Frank Schaeffer.
Seasonal recipes with fresh and cooked fruits and vegetables, no sugar added. Many recipes for muffins, pancakes, punch, pudding, and Popsicles.
Book Cooks: Literature-Based Classroom Cooking, 1991, Janet Bruno, Creative Teaching Press.
Recipes and other classroom activities to accompany teaching thematic units based on children's literature. Some of these recipes are pretty visual, but the general ideas can be a good launching point for food and cooking activities with students of all levels.

Switch Resources

AbleNet

Adaptivation Incorporated

Don Johnston

Enabling Devices

Adapted from:

Cowan, C. & Shepler, R. (2000). Activities and games for teaching children to use monocular telescopes. In F. M. D’Andrea and C. Farrenkopf (Eds.) Looking to Learn: Promoting Literacy for Students with Low Vision (pp. 137-161). New York, AFB Press.

 

Goal: The student will demonstrate skills for magnifier maintenance.

Objective:  The student will:

  1. hold the magnifier properly.
  2. communicate the purpose of the device.
  3. clean the magnifier appropriately.
  4. assume responsibility for the magnifier.
  5. store the magnifier in a convenient location for quick retrieval.
  6. initiate use of the magnifier.

Goal: The student will demonstrate skills for the use of magnifier usage.

Objective:  The student will:

  1. position self for optimal viewing.
  2. stabilize the reading material / object.
  3. stabilize the hand using the magnifier.
  4. adjust the head-to-lens distance.
  5. coordinate the hand, head, and eye movements specific to the type of magnifier.
  6. use the magnifier to read on a flat surface.
  7. read a variety of print formats. 
  8. track at a speed which allows for reading commensurate with reading level.
  9. develop stamina for the duration of an age-or grade-appropriate assignment.
  10. use the magnifier to read textbooks.
  11. use the magnifier to read class handouts
  12. select the appropriate magnifier for the task.
  13. use the magnifier for non-print activities.

 Adapted from:

Cowan, C. & Shepler, R. (2000). Activities and games for teaching children to use monocular telescopes. In F. M. D’Andrea and C. Farrenkopf (Eds.) Looking to Learn: Promoting Literacy for Students with Low Vision (pp. 137-161). New York, AFB Press.

 

Goal: The student will demonstrate skills for monocular telescope maintenance.

Objective:  The student will:

  1. hold the device properly.
  2. communicate the purpose of the device.
  3. clean the device appropriately.
  4. assume responsibility for the device.
  5. store the device in a convenient location for quick retrieval.
  6. initiate use of the device.

Goal: The student will demonstrate skills for the use of a monocular telescope.

Objective:  The student will:

  1. position self for optimal viewing.
  2. scan the environment and locate stationary objects without the telescope.
  3. locate stationary objects with the telescope.
  4. focus on a stationary object.
  5. identify objects with device.
  6. identify pictures with the device (e.g., line drawings, photos).
  7. scan on a horizontal plane, using landmarks to find stationary objects.
  8. adjust the focus for objects at varying distances.
  9. copy familiar symbols.
  10.  remember and copy up to 5 words per glance through the telescope.
  11. scan with the device to locate sings/symbols/objects in a variety of planes.
  12. track movement at a consistent focal distance.
  13. develop a systematic scanning technique to locate a moving object by incorporating landmarks when available

incorporate 

by Marnee Loftin, Psychologist, TSBVI

All teachers and other professionals in the field of visual impairment recognized that students who are visually impaired can also have learning disabilities. Diagnosing these in a way that is meaningful to the educational process and complies with federal and state law is often difficult. At TSBVI a great deal of effort has been directed toward developing systematic procedures that can be used to document the present of a specific learning disability. At this time, the determination of a specific learning disability in the area of reading is one that has been well developed. Further work is being done in developing specific procedures in the areas of mathematics as well as exploring the concept of dyslexia in students with visual impairment.

The Texas special ed rules state that the presence of learning disabilities may be determined either by statistical comparison of intelligence to scores on tests of individual educational achievement or by informal methods that focus upon observation and classroom data. For a variety of reasons, the second method seems to be the most effective way for determining the presence of learning disabilities. Formal assessment may be used to begin the process of determining a learning disability, but is always supplemented by examples of classroom work and classroom observation.

The formal assessment process will vary depending upon the particular needs that are of concern to the teacher and/or parent. However, in all cases, we begin with a formal measure of intelligence that has been administered and interpreted in a manner consistent with an understanding of the impact of visual impairment. Again this gives us a baseline that allows us a rough "predictor" of anticipated educational achievement. Additional sources of data are discussed below.

READING DISABILITIES 

When assessing the presence of a specific disability in reading, formal assessment data is generally supplemented by a comprehensive speech and language evaluation. Skills assessed usually are those such as verbal sequencing, verbal memory, ability to rapidly retrieve information, and phonological awareness. In addition, history is reviewed to determine age at which letters were first recognized and any difficulties with rhyming that occurred early in life. These are all skills that are frequent deficit areas in students with learning disabilities. They seem to be equally predictive with students who also have visual impairment.

Classroom observations and informal assessments are used to determine functional performance at this time. Aspects such as slow reading rates, numerous false starts and dysfluencies, incorrect use of suffixes, excessive reliance on context clues and good comprehension even in the presence of great difficulties with decoding are all diagnostically significant in analyzing these materials.

Writing samples are often used as further data in establishing the presence of a reading disability. Punctuation and spelling errors do not assume the same importance in diagnosing a reading disability with a student who has a visual impairment. These are often a direct result of a variety of issues associated with visual impairment. Diagnostically, the most important issue may be the sheer simplicity of a writing sample. Given adequate adaptations, clear directions, and appropriate modifications, the final product of a very simple writing sample may be another indicator that all attention is being directed to the encoding process.

As mentioned in the article that appeared in RE:view, care should be taken "not to over identify learning problems by basing any assessment upon poor spelling , punctuation or both; or by doing any such assessment when a student's skills are being affected by a transition to a new medium. Equally, care should be take not to under identify learning problems by refusing to recognize significant problems simply because the student has a visual impairment.

FUTURE AREAS OF INTEREST

Again, efforts are underway to develop a systematic procedure for determining the presence of a learning disability in mathematics. Additionally work is being done in exploring the concept of dyslexia as well as visual processing difficulties. Observation in this environment suggests that both of these issues exist in children with visual impairments and seem to be a separate and severely limiting factor in the learning of new skills. Objectively determining the presence of these conditions as a separate disability is an area of interest for us at TSBVI.