How Families Cope With Their Dyslexic Child
By Gayle Zieman, Ph.D.
Dyslexia isn't just an academic and individual problem; it's also a family problem. Having a child with a learning problem impacts the entire family. Parent, brothers, sisters, and even grandparents become involved, must adjust, and are changed in the process.
Families don't just cope with a child who has dyslexia; they are forever molded by it. The dream of a boy or girl who tops the first grade reading groups and shines in the third grade spelling bee is shattered and replaced by the recognition that years of special education and reading help lay ahead. The realities for family life come long hours of extra help at the kitchen table, schlepping a child, often with siblings in tow back and forth to tutoring, and finding the time and energy above and beyond to encourage activities having no pencils or books involved. Millions of families live this reality daily, but not without it taking g a toll on every family member and changing them in some way. It's tough, and comes with scars, but can be the experience of a lifetime.
Recognizing There Is A Problem
Readin' and writin' troubles are easy problems for families to attempt to deny or hide. The terms "The Hidden Handicap" or "The Seven-Hour Handicap" usually refer simplistically to the idea, or at least the hope, that learning and reading problems aren't obvious outside school. But, from inside a family they are very obvious; just often glossed over or turned into family denial.
The impact on and change to the family begins with the process of recognizing and accepting that Johnny or Suzy truly has a learning or reading problem. These are problems without a distinct onset, and usually they are not totally obvious. Recognizing and accepting that a child has Dyslexia can take years and frequently pulls at the very core of marital relationships or family unity.
There are usually no distinct signs of Dyslexia during the first 12 to 18 months of life. Oft en the pregnancy and birth of a child with a future learning problem was marked by some physical difficulties in the pregnancy or problems at birth such as long labor, forceps delivery, or low birth weight. For those parents who had a difficult pregnancy or experienced worries about their child's difficult delivery and neonatal period, they are very relieved that their infant has no obvious problems. They, of course, want to believe that their son or daughter will never have problems again and will develop into an honor roll student. For those parents where there were no pregnancies, birth, or neonatal difficulties, all is bliss and understandably they don't want to see that picture marred by any developmental issues.
The toddler with a major future reading problem generally shows subtle but growing symptoms of concern; symptoms the parents want to dismiss and believe will simply go away. Common with dyslexic children as toddlers are delays in beginning to speak single words or beginning to walk (both of which usually begins around the first birthday for most children). Parents when faced with a child of 18 to 24 months who does not yet speak or is clumsy often write off these as simple "everyone does everything for him" or "she'll speak when she needs to." Understandably they do not want to believe that their apparently well-developing child has any problem. Parents often go to great effort to avoid recognizing there might be a problem. For example, the author has seen families who repeatedly change pediatricians in the search for a doctor who will tell them all is well, or parents who accuse someone else of creating the delay such as an over doting grandmother, older sibling, or even the other parent.
Children with mild Dyslexia very often show no clear indicators of the problem until the late preschool years or kindergarten when the parents are beginning to teach their child to write his/her name and are pointing out simple reading words in the environment like "Stop" or the name of the child's favorite movie. Just like the parents whose child did not begin speaking at the usual time, these parents want to believe "He'll learn to write his name when he's ready" or "She'll do find when she gets to kindergarten." Frequently even into first or second grade, parents will deny there is a problem and want to blame it on the school's failure to recognize their child's unique learning style, or simply accuse the teacher of poor teaching.
After what are often many months and sometimes years of trying to believe Johnny or Suzy will "snap out of it, "Parents usually have some crucial moment when they know there is a delay which they must face. That moment may be observing that their child can't do something peers can, or finally realizing that their child doesn't like to write his name or recite nursery thymes because these tasks are very difficult and frustrating for her. This moment of recognition can often be very powerful and frequently lives as major life memory for a parent. Unfortunately, many times one parent has such a moment and the other parent doesn't. There is often great relationship conflict when one parent says I know there is a problem and the other parent still clings to denial.
Impact on Parents
Following the first full recognition of a problem comes a flood of emotions. Most often parents feel guilt and anger. They desperately want to identify "the cause." They frequently feel guilt that they must have done something to cause the developmental problem or that someone else must be the cause. Often they vacillate between self-blame and blaming someone else. In this stage, parent's assignment of blame is often irrational with thoughts like: "If I hadn't worked during my pregnancy this wouldn't have happened" or "If the doctor had induced labor rather than…then all would be ok." Usually parents move beyond the stage of guild and anger after a couple of months. Focusing parents on the needs of their child and the areas where their child functions well generally helps them move into full acceptance of the problem. They are then ready for the diagnostic and remedial help needed.
A small percentage of parents are never able to accept the diagnosis and move beyond emotions to appropriate actions. Many of these parents believe that they are personally stigmatized by having a "less than perfect child." These parents often behave in active or subtle ways to reject their child. Teachers may see these parents as uninvolved; the parent who reluctantly attends IEP meetings and parent-teacher conferences or who behaves as if their child is just "lazy." The non-accepting parent often turns outside the family for support such as through excessive work or activities, which keep them away from home. When one parent is rejecting or feels stigmatized and the other parent has accepted the diagnosis, there can be ongoing relationship stress between the parents that can lead to estrangement or divorce.
Even when both parents fully accept the diagnosis and remedial plans, relationship stresses often continue. A common pattern is for one parent to assume the primary role of managing their dyslexic child. As this parent takes the child to therapies, arranges tutors, and goes to school meetings, the other parent often feels ignored, left out, or burdened with other family duties. Polarized roles in the family can develop easily without any intent by the parents to distance themselves from the other.
Most parents over time normalize their home life into providing for their dyslexic child while keeping many of the same interactions and roles they had before the diagnosis. Problems within the family may occur however, if a parent takes on an exaggerated role. Exaggerated roles can include becoming a crusader for the cause of dyslexic children (a role which may benefit all dyslexic children but be destructive to their own family) or becoming very enmeshed in daily caring for and remediating a child's learning or reading problem. The extremes of over and under involvement are pitfalls for parents and families.
Impact On The Child
Having a learning disability is almost always a threat to a child's self esteem. In the family a dyslexic child often feels that they are not as good as their siblings, specially around academics, and may feel rejected if they have a parent who does not understand and accept their strengths and weaknesses. If a parent dotes on the dyslexic child and always treats them as the "disabled one" in the family, the child is at severe risk of becoming overly dependent on parental attention. This can impair the development of independence in adolescence and adulthood. The overly dependent child in adolescence frequently is angry with parents and may turn to misbehaviors to express this anger. Raising a learning disabled child who feels supported and valued by their family but not smothered by the extra academic help is a delicate balancing act for any family.
A dyslexic child takes more time and parental attention than a child without any developmental problems. That extra attention, however, often means less attention for siblings. The imbalance in attention often breeds resentment and anger in siblings who feel that their sibling with Dyslexia gets special treatment.
Additionally, siblings are commonly called into service by parents to cover for parent duties while parents attend to the reading and other needs of their sibling. Siblings are also frequent tutors, babysitters, and transporters of a dyslexic brother or sister. Some siblings accept these roles happily and well, but many resent them and harbor deep anger at their parents and sibling over what seems to them to be saddling them with a handicapped sibling.
Looking Beyond School
Issues for the family with a learning disabled child often go beyond the elementary school years. Assisting a dyslexic child to develop appropriate independence in adolescence can be quite a challenge. How much independence to encourage and allow is a difficult issue for all families which can divide parents and pit children against parents. For the parents of a dyslexic child there may be special issues of preparing for the rite of passage presented by the driver's license exam, or requesting accommodations for taking college entrance exams. Siblings may believe that their brother or sister is getting an easier time than they were given, or that parents care about them more.
Another difficult stage is entered when parents realize that their child will soon be out of high school. College or vocational planning can be very taxing on a family. Preparing a learning disabled child for independent living represents a totally new dimension from the diagnostic and remediate issues of the elementary school years.
When Outside Help Is Needed
In many families there are times when one or several of the family members get stuck in thoughts or feelings which are not benefiting the child needing help. This could be the parent who continues to deny the dyslexia, a sibling who feels slighted by the attention their dyslexic sibling needs, or the child with the learning problem who feels unworthy because of their struggles. When these psychological difficulties arise in a family and last for more than a few weeks it is often best to seek outside help. The help can come from an extended family member, another family who has gone through a similar situation, or a mental health professional such as a professional counselor, psychiatrist, or psychologist.
Very often the best help comes not from individual counseling or therapy, but rather from work with the entire family or a subset such as the parents or parents and child. Working with two or more family members provides the counselor with a wider perspective on the problem and allows for interpersonal issues in the family to be addressed directly. This type of counseling is called Family Therapy.
Family Therapy can be far more powerful, and often takes less overall time to achieve results, than individual counseling. Unfortunately, many counselors, and mental health therapists are not trained in Family Therapy or do not practice it. To find a family therapist you may need to put in some effort asking others for referrals or calling prospective counselors to ask them if they do Family Therapy. A good family therapist will want to get to know all or a least a subsection of the family members and will deal directly with issues causing stress between family members. A good family therapist will think of dyslexia as a problem for all members of the family, not just the child who struggles with reading.
The Big Picture
Whether at the transition to adulthood or the first suspicions of a problem during the preschool years, a family is forever changed by having a dyslexic child. While the trails and troubles are many, they represent a unique opportunity for a family to come together, to help their child, and to adapt in ways which build relationships and strengthen family bonds. Many families have turned their one-time fear and denial into a life of enriched family support. The rally to support their dyslexic child created opportunities for family awareness and growth which would have been unknown to them otherwise. For families, it's tough, and comes with scars, but it can be the experience of a lifetime.