CFLE in Context: Working with Families with Special Needs

by Audrey R. Kraynak, Ph.D., CFLE
CFLE Network
Content Area
Internal Dynamics of Families

Currently, I work intermittently as a consultant and trainer for the Ohio Center for Deaf-blind Education. Two years ago, I "retired" from a public school setting where I worked as a school psychologist for more than twenty-five years. In addition to being a CFLE, I hold five teaching licenses granted by the Ohio Department of Education as a Vocational Consumer Homemaking Teacher (B.S. Ed.) and School Counselor, as well as a permanent certificate in School Psychology. (In Ohio, teachers/educational professionals must renew their "license" or teaching certificate every five years, hence a five year license.

Because I met the eligibility criteria for a permanent certificate prior to passage of the five year license requirement, I have a permanent certificate in school psychology for the rest of my life!). In addition, I am licensed by the Ohio Board of Psychology to work independently as a school psychologist and am a Nationally Certified School Psychologist. My career began as an assistant preschool teacher in a university program followed by a full-time job as a vocational home economics teacher in a rural high school in northwestern Ohio. Following graduate work in child development/family studies (M.S.), I taught part-time at the college and university level before returning to school to earn my certification in school psychology. Several years later, I earned a doctorate in school psychology as well as curriculum and instruction and, three years ago, completed a post-graduate course leading to a diploma in school neuropsychology.

For this article, I am going to share information about my career path as a consultant and trainer for the Ohio Center for Deaf-Blind Education (OCDBE) where I have worked with families of children with special needs.

My involvement with the OCDBE began when I was asked to become a member of their Deaf-Blind Technical Assistance Project (DBTAP) approximately twenty years ago. This project involved training individuals from various disciplines to provide consultation services to parents and school personnel who work with individuals who are deaf-blind. At the time of inception of the DBTAP, I was working as a school psychologist in a program for children with severe/profound developmental delays who lived in a residential facility. Because of limited experiences both academically and professionally I felt very inadequate regarding my knowledge of the needs and characteristics of this population and hesitant to recommend/implement appropriate interventions. I believe that the training that I received from the DBTAP contributed significantly to my effectiveness as a school psychologist, consultant and trainer.

In my role as a consultant to families of children with specials needs, I have worked with children ranging in age from infants to adolescents who are on the Ohio deaf-blind census. According to an OCDBE pamphlet, "Deafblindness means concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness and children with blindness." There are several ways that an individual can meet the criteria to be identified as deaf-blind. One group of individual's may have a visual acuity of 70/200 or less with correction and a hearing loss ranging from mild to profound is present; within this group, the individual may have a documented functional loss in either hearing or vision as well as a diagnosed progressive loss in either one or both sensory modalities. A subset of individuals identified as deaf-blind may have been diagnosed with a progressive medical condition(s) that will result in concomitant hearing and visual loss that, without special education intervention, will adversely affect the student's performance, i.e., Usher's Syndrome. A third group may have developmental delays as well as documented hearing and vision losses, that if considered individually, may not meet the requirements for auditory impairment or visual impairment, but the combination of which adversely affects the student's educational performance. Many of the children with whom I have worked fall into this latter group due to physical disabilities as well as visual and hearing impairments. Even though individuals identified as deaf-blind may have some usable hearing and vision, they may fall on a continuum from mildly to severely disabled.

As a consultant, I interact with parents/caregivers or educators/therapists as well as observe and assess the child's skills across developmental domains. Many of my visits take place in the young child's home environment. For a school-aged student, the visit usually takes place in the school setting. After gathering background information including difficulties during the pregnancy and birth process, medical issues and parental/caregiver/educator concerns, I try to determine where the child is functioning with respect to the developmental domains of cognition, communication, self-help, social-emotional and motor skills as well as determine the degree of functional auditory and visual skills the child may have. This information is compiled into a report along with recommendations designed to help the child acquire skills in each of the developmental and sensory domains. For very young children, the recommendations may involve helping parents develop a pre-language communication system using tangible symbols and calendar boxes or working through feeding and sleeping issues while, for school-age children, the recommendations usually focus on developing functional skills that enable them to participate in various activities either with assistance or independently. For the very young child, providing alternate experiences that can compensate for their sensory difficulties is extremely important in helping them achieve their developmental potential. For some consultations, the parents rather than the child may be the primary client due to the stress of caregiving for a child with a disability. Many times, the parents need to be made aware of resources to help them deal with the stressors related to having a child with a disability. Sometimes parents experience stress as a result of unfulfilled expectations regarding the child as well as stress resulting from frequent hospitalizations and large medical bills.

Along with providing consultation services, the OCDBE also sponsors an annual weekend retreat for parents of individuals who are on the deaf-blind census. For several years, the retreat was family-oriented and held at a handicap-accessible camp which provided the deaf-blind youth with developmentally appropriate fun experiences with typically developing youth. As currently structured, the weekend retreat educates parents regarding the needs and characteristics of children who are deaf-blind, provides parents a respite from caregiving, and builds a support system with other parents as well as professionals working with youth who are deaf-blind. During the retreat, members of the DBTAP team interact with parents, answering questions and helping to provide information about state, community and educational resources.

In addition to my role as a consultant, I have also co-facilitated workshops for parents and other professionals which are sponsored by OCDBE. I became a trainer for the INSITE model in the state of Ohio after having been trained as a parent advisor and attending additional workshops. INSITE, which is an acronym for IN-home Sensory Impaired Training and Education, is a model curriculum designed to provide in-home interventions for infant, toddler and preschool-aged multi-handicapped sensory impaired children. The grant-funded curriculum developed at the SKI*HI Institute at Utah State University is presented during a six day workshop. The following are among the topics covered during the workshop: (a) the emotional needs of parents and family members whose child has multiple impairments including both a vision and hearing loss; (b) the importance of bonding and how bonding is affected by sensory disabilities; (c) information about the anatomy of the eye, ear and the brain as well as differences in developmental milestones of children who are visually and/or hearing disabled; (d) medical conditions that are associated with vision, hearing and motor disabilities and (e) the development of informal and formal communication skills. These topics are presented using a multi-method approach that includes discussion, traditional lecture, videos, small group interactions and simulation experiences to help develop an understanding of what it is like to have multiple disabilities. As a culminating experience, participants have an opportunity to use the INSITE Checklist to assess a child's skill levels across multiple developmental domains and develop a set of recommendations to foster skill development or address a parental concern.

It is rewarding to help parents and professionals develop a better understanding of their child and the child's disability. It is also rewarding to see the developmental progress that the children make even though, at times, the rate of progress is slow and the steps are small. The hardest part of my role as a consultant is helping parents whose child has been diagnosed with a terminal medical condition. Being able to understand the grief process and "normalize" their reactions is important when helping these parents adjust to this unexpected event. Encouraging them to continue to bond with their child is also important. I feel that my academic background in child development and family development as well as my knowledge of community resources has helped me to work more effectively with families of children who are deaf-blind or who have multiple disabilities. Moreover, my knowledge of the effects of stress and stages of grieving has enabled me to understand what a parent or family member may be experiencing. The on-going training that has been provided through the DBTAP as well as my involvement with the INSITE curriculum has augmented my understanding of the needs and characteristics of youth identified as deaf-blind.

Audrey R. Kraynak, CFLE, is a retired school psychologist who works as a substitute school psychologists. Currently, she is the President of the Ohio Council on Family Relations. She lives in Stow, Ohio with her husband Jim, has two adult daughters and sons-in-law and five grandchildren ranging in age from one year for twin granddaughters to 14 years for their oldest grandson. Grandparenting requires the use of many Family Life Education skills!