May 2005

By Sheila Meindl, Ed.D., Associate Professor, Special Education; Director of Teacher Education, Marymount Manhattan College

Overcoming Dyslexia, an all-inclusive book on dyslexia, examines many issues for both parents and teachers.  Dr. Shaywitz gives case examples of dyslexia from 1676 to the present time.  She examines the stress of trying to read for children and adults with dyslexia.  She writes about the 2 million students who are receiving special help for reading problems in the United States.  Dr. Shaywitz states that girls often go undiagnosed with their reading problems.  Thinking that boys have more and more serious reading problems, professionals often do not recognize the reading difficulties of girls.

Dr. Shaywitz identifies the core of the problem in dyslexia as a weakness in phonology.  Research pinpoints the weakness at the lowest level of the language system. The phoneme is the fundamental element of the language system, the essential building block of all spoken and written words.

The earliest clues to a potential reading problem can be recognized by:
1. Listening to a child’s speech
2. A delay in speaking
3. Difficulties in pronunciation
4. Insensitivity to rhyme
5. Talking around a word

Family history is also important in the identification of a child with reading problems.  Addressing the history of family members and reading problems is important in the determination of these reading problems with students.  Reading problem may be present in parents, aunts, uncles or siblings.    Looking back at the success of family members in learning to read usually can be traced to specific methods and materials.  Similar methods can be tried with the newest family member with reading problems.

Dr. Shaywitz has included important information for parents or teachers.  She lists methods and materials to break the code with children having difficulty with reading.  She includes children’s books that “play with language” and books to read to a young child.  She has taken “the breaking the code process” and developed principles and steps for teaching the child or adult with dyslexia.  Dr. Shaywitz also stresses the need for teaching the person with dyslexia to gain mastery and fluency in reading.

A professional might consider Overcoming Dyslexia, a book for parents.  In many ways it is but it is also for professionals.  The suggestions for the teaching of reading are valuable.  The accommodations listed are important for both parents and teachers to know.  The chapter on Choosing a School is certainly for parents but professionals have much to learn from this chapter.  The evaluation of school programs is important to both parents and professionals.

The value of Overcoming Dyslexia to parents and professionals is almost immeasurable.  The book is so full of pertinent information and techniques for helping the child with dyslexia.  The book is outstanding, one that all of us, professionals and parents should read and use.

About the Author--Dr. Sally Shaywitz, is a neuroscientist, professor of pediatrics at Yale and codirector of the Yale Center for the Study of Learning and Attention.  Considered a world expert on reading, she has centered her research on dyslexia  and the effective treatment of it. 

    Educational professionals, including administrators, school psychologists, special and general education teachers must understand the grief process that parents of children with disabilities experience.  When the child with special needs is born or identified, some part of the parents' dream for that child, for their other children and for themselves dies.

    McGill Smith (1997) identified the painful loss that a parent feels when faced with the birth or identification of a child’s disability.  She identifies eight stages of grief and loss for the parent:
1. Denial
2. Anger
3. Fear
4. Guilt
5. Confusion
6. Powerlessness
7. Disappointment
8. Rejection.

    Educational professionals are often working with parents who are in grief.  Some of these times are difficult for both the parent and the professional.  Initially, the parent may be in denial - looking for reasons for the child’s problems.  The parent may not be ready to alter his/her dream for the family.  Many people may be blamed by the parent for the child’s disability, especially doctors and other professionals.   

    When the parent enters the anger stage, the school professionals can often be the recipients of that anger.  A parent is often angry over the loss of a perfect child and the horrendous demands the parent is feeling.  So close to the problem, the educators are confronting the issues face to face with the parent.

    Fear is also an integral part of the parent’s reaction to a child’s disability.  On many levels, the parent is fearful.  What will happen to this child?  Can the family afford to care for and educate this child?  How will this child affect the other children in the family?  What does the future hold?  What will happen when I die?  The parent asks him/herself all these questions and probably many more.

    A parent may question many things about what happened to this child.  Did I contribute to my child’s disability?  Was I negligent in any way?  What was my part in this?  The parent may feel guilt.  There may be confusion as the family adjusts to having a child with a disability.  There may be upset with the loss of personal time and the disappearance of established routines. Adjusting to the special needs of the child can be difficult. A new unexpected, major demand has been placed on the parent and the family.

    Initially, a parent may feel powerless over the child’s disability and also over the professionals working with the child.  This feeling may persist until the parent begins to gain knowledge about the disability and the appropriate actions to take to help the child.  A parent may feel disappointed, challenged and frightened by the necessary requirements for raising this child.  There are times when the parent may reject this child or, more so, the special attention needed to nurture the child (Parental Grief and Adjustment, 2003).

    The grief process is a painful one.  Marsh (1995) edited a book about the grief process and the feelings of parents of children with disabilities.  In his book, parents stated their feelings about having a child with special needs.  One mother wrote,  “Listen! Just listen.  That is my biggest fear.  People won’t listen.”  Another mother wrote:

The overwhelming emotion I felt when Joel was born was
fear, fear of the unknown.  What else is lurking around the corner?  Can I handle this?  Can I cope?  Can I be a good mother to this child? (p.x-xi)

    A parent needs to complete a normal, healthy, healing process. When that occurs, stability will return to the family and parent will continue to search for much-needed information.  The parent is getting ready to generate new dreams for the child, for herself/himself and for her/his family.

    Turnbull and Turnbull (2001) recommended that professionals go through a “shoes test” to understand what parents go through.  The professionals should put themselves “ in the shoes” of the parent.  They need to feel the parent’s pain, to feel the pressures parent’s have when raising a child with special needs.  Hopefully, the professional may feel the upset that a parent of a child with a disability sometimes feels.

     There are times that are more stressful for a parent with a child with a disability, times that the parent and family might need more support from educational professionals.  This might include the time of the initial diagnosis, when additional disabilities are discovered, at school placement, during adolescence, when the child becomes aware of his disability, during transition to adulthood, during a subsequent pregnancy or parental illness, during future care arrangements, at permanent care application, with the aging of parents and with the death of a caregiver.

    As educators, there are two very painful times in which school professionals are strongly involved with the parent and child.  When a child is identified as having a disability, the parent and family needs strong support from the educational community.  The educators can be very effective in helping the parent face the challenges of having a child with a disability.  Parents are also very needy during the child’s transition to higher education, to work, to full-time adult placement.  The parent is also fearful about what will happen to the child.  It is a stressful time.  - One in which educators can help and educate the parent about choices for adult living.  

        There are also times when a parent may be more reactive to educational professionals.  This could include the time when the educator bears bad news, when the educator relays relevant information, when the educator is involved in continual assessment, when the educator assists in decision-making and when the educator is an advocate for the child.  It is important for educators to be cognizant of the stressful times and the times when parents might be more reactive (Parental Grief and Adjustment, 2003).

    Silver (2000) states that when one member of a family suffers, everyone in the family suffers.  Educators need to remember that the parents and siblings are in a time of change and adjustment.  The family members may need specific support from the professionals in the educational system.  The family will need professionals they can trust.  Yet, there is more than this.  As one mother stated, “We need respect, we need to have our contributions valued (Moore, 1990).

     Specifically, educators must listen, educate the parent, value a parent, respect parental rights and empower a parent to make good decisions regarding his/her child.  A parent needs to have working relationships with the education professionals and the educator must establish pertinent, appropriate relationships with the parent.  An informed educator can make a difference in the lives of the child, parents and family.

References

Centre for Community Child Health. Parental grief and adjustment to a child with a disability. December 2003.
http://hnb.dhs.vic.gov.au/commcare (31 December 2003).

Greenspan, , S.I. & Wieder, S. (1998).The child with special needs: Encouraging intellectual and emotional growth. Redding, MA: Perseus.

Kubler-Ross, E. (1970). On death and dying. New York : Mc Millan.

Marsh, J.D. B. (Ed.).(1995). From the heart: On being the mother of a child with special needs. Bethesda, MD: Woodbine.

McGill Smith, P.(1997).You are not alone: For parents when they learn that their child has a disability. NIHCY News Digest, Number 20, 1-50.

Moore, C. (1990) A reader’s guide for parents of children with mental, physical or emotional disabilities (3rd ed). Rockville, MD: Woodbine

Silver, L. B. (1998).The misunderstood child. New York: Random House. 

Turnbull, A.P. & Turnbull III, R. (1986). Families, professionals and exceptionality: A special partnership. Columbus, OH: Merrill

About the Author:

Sheila M. Meindl is Associate Professor of Special Education and Director of the Teacher Education Department at Marymount Manhattan College, New York, New York. Dr. Meindl is a Professor member of NASET.