Having a Child with a Disability

The parents of Zachary coped with many expected stressors during their married life, just as any other marriage. Attempting to manage the daily chaos of raising five children on one income certainly takes organization, balance and patience. However, they did endure many unexpected stressors that weighed heavily on coping and management skills. The death of their second child following open heart surgery, severe flooding of their new home and raising a child with special needs are just to name a few. This paper will discuss how Zachary's parents processed the impact his special needs had on the entire family and how the ABC-X model theory applies to their story.

Zachary was born strong and healthy, weighing 8 pounds 4 ounces. He was the youngest of six children. Zachary was reaching all of the developmental milestones except one-he was not babbling or attempting to say sounds or words. He was 20 months old and still was not babbling or speaking when his parents sought an evaluation to find out what was wrong. After ruling out the possibility of seizures and hearing difficulties, a speech evaluation was completed.

It was determined that Zachary had verbal speech apraxia, a neurological motor planning disorder.¹ Specifically, verbal speech apraxia is when the words for speech are in the brain but the signals for the articulation of those words do not properly transmit to the mouth. This diagnosis required intensive one-on-one speech therapy and learning sign language or the use of assistive technology in order to communicate with Zachary. The outcome for speech apraxia varies from child to child. Some children learn to speak intelligibly where some children may not ever develop the ability to speak intelligibly. Zachary's parents were devastated with the news.

In addition to receiving the diagnosis of speech apraxia, an additional evaluation discovered that Zachary had sensory integration dysfunction.² Sensory integration dysfunction is a neurological disorder that causes a child's senses to not integrate properly. This can occur in any of the five senses and/or in the tactile (touch), proprioceptive (muscle and joints) or vestibular (balance) senses. Sensory integration dysfunction can cause a child to need special therapy in fine motor skills (including self-help skills) and gross motor skills. This added the need for occupational therapy and the implementation of a daily sensory diet.³

Zachary's parents went through the five stages that Elisabeth Kubler-Ross in On Death and Dying (1969) characterized as reactions people experience in impending death: denial, anger, bargaining, depression and acceptance (Naseef, 31). The grieving process is like an adjustment to a death. "The only thing is, for an injury or disability, it's not as easy to adjust as with a death because with a death, the person's no longer there. With a disability, you have a constant reminder" (Scherer, 106).

As Robert A. Naseef, Ph.D. indicates in Special Children, Challenged Parents (1997), the "birth of a disabled infant sometimes feel like the death of the expected normal, healthy child" (32). The birth of a child is considered a predictable family transition (Lamanna and Riedmann, 436). However, when a child in the family has special needs, stress and conflict can occur between the parents themselves and between the parents and other members of the family and society. Another stressor that Zachary's parents had to cope with involved how society viewed Zachary's speech disorder. "Society looks at people who are blind or who use crutches and does not consider them to be mentally retarded. But they label people who have speech problems as mentally retarded" (Scherer, 23).

Zachary's parents initially did not want to face the idea that their child had special needs. An initial reaction in the denial stage may be "Not me, not my child." They did not want to believe it was happening. It is during this time that parents are actually buying time until they can find the inner strength and external support necessary to face the reality (Naseef, 20). As pointed out by Lamanna and Riedmann, there are effective ways to meeting crises. A positive outlook, spiritual values, high self-esteem, open, supportive communication, adaptability, informal social support, extended family and community resources are all determining factors in crises situations (454-459). However, when parents discover that their child has special needs, they go through an initial reaction of shock and denial despite what factors exist to help them cope.

Anger is another stage Zachary's parents found themselves experiencing. His parents started processing anxiety, which comes from the fear of whether or not they were capable of raising a child with a disability. Guilt followed quickly. Zachary's parents began to question what they did wrong to cause the disability to happen.⁴ Lamanna and Riedmann gave an example in that "parents who blame themselves for their child's developmental disability may be less able to cope with the situation than if they interpret the occurrence of the illness as beyond their control" (451). Naseef indicates that parents can move on with their lives "after settling with themselves what their responsibilities actually are toward the child" (24).

Once anxiety, fear and guilt were processed, their thought processes turned to "why me" or "why him." This statement only built anger in Zachary's parents, especially having already dealt with the death of a child. They were feeling that "enough was enough." One of the most perplexing questions for Zachary's parents was, "Why our son when there are so many parents out there who abuse and neglect their children?" This stage is when his parents became active and energized in finding the best possible services for Zachary because the reality of his disability was at the core of his parents' anger.

Following anger came bargaining as another means of buying time. Zachary's parents began to negotiate with God. Some parents may even deny the recommendations of professionals or shop around for a more hopeful diagnosis as a way to postpone the inevitable (Naseef, 36-37). However, Zachary's parents did bargain with God and attempted to make a deal for a "miracle." They would say to God, "If we work harder, pray harder and diligently do everything we are suppose to do, will you please make Zachary all better." To move on from the anger and bargaining stages, Zachary's parents had to rethink and redefine what fairness in the universe meant.

Naseef states, "When reality can no longer be denied, when angry energy does not change the child's condition, and there are no more deals to be made, a sense of depression sets in" (40). Zachary's parents experienced this stage as the reality of Zachary's special needs began to set in. This stage of sadness made his parents begin to withdraw from "normal" developing children outside of the home. This was because other children the same age as Zachary were reminders of what Zachary was unable to do. This depression stage of the grieving process was a way Zachary's parents attempted to avoid facing their fear of the unknown.

The denial, the anger and the bargaining did not change Zachary's disability. Now they were faced with "What do we do now?" The fear and confusion were overwhelming and seemed to immobilize them for a time. "Most parents eventually go from asking 'why' to 'what do I do now?'" (qtd. in Brown, Goodman & Kupper, 1997). For Zachary's parents, the dilemma is how to adjust to the child they actually have. They needed to formulate new dreams and goals based upon Zachary's real abilities. Doing this became part of their healing and growth.

In The Well-Adjusted Child, Dr. Phil E. Quinn stated, "Well-adjusted, healthy, thriving children tend to have well-adjusted, healthy, thriving parents...who have settled into a life with purpose that enables them to raise children and pursue life's greatest rewards" (132). Reading this statement helped Zachary's parents realize they needed to adjust and cope with what was happening for the well being of the entire family. "Families that cope well with stress are strong families, who emphasize mutual acceptance, respect and shared values" (Lamanna & Riedmann, 453). Zachary's parents reached a level of acceptance that enabled them to move forward and rework their dreams for Zachary based on his abilities. In the acceptance stage, as Naseef points out, the pain subsides for parents of children with disabilities and chronic illnesses, but the hard work is just beginning (44).

The determining factors as outlined by Lamanna and Riedmann (454-459) is what helped Zachary's parents recover from the unexpected crisis of having a special needs child. One factor that influenced how Zachary's parents would appraise the crisis and ultimately cope with his special needs is their previous experience with the death of a child. How a parent interprets a crisis can greatly influence how they will cope with the crisis. As pointed by Lamanna and Riedmann, one factor that influences the appraisal of a stressor event is "the family's previous experience with crises, particularly those of a similar nature" (451-452).

One particular poem stood out to Zachary's parents as the true meaning of acceptance. In the book entitled Pain Is Inevitable But Misery is Optional: So, Stick a Geranium in Your Hat and Be Happy, Barbara Johnson quoted the following poem from an unknown source.

Acceptance

Acceptance is the answer to all my problems today.

When I am disturbed, it is because I find some

person, place, thing or situation-

Some fact of my life-unacceptable to me, and

I can find no serenity until I accept that

person, place, thing or situation as being exactly

the way it is supposed to be at this moment,

Nothing, absolutely nothing happens in

God's world by mistake.

Unless I accept life completely on life's terms,

I cannot be happy.

I need to concentrate not so much on what needs to

be changed in the world as on what needs to

be changed in me and in my attitudes.

At this point, Zachary's parents began to research his disability to find out what needed done to meet his special needs. His parents started with two one-hour sessions of speech therapy and one hour a week of occupational therapy. The day in and day out of attending weekly therapy sessions and implementing daily therapeutic techniques at home put a strain on the entire family. However, Zachary's parents balanced their demands and continued as much as possible with the normal functioning and routines of the household.⁵ Lamanna and Riedmann quoted McCubbin and McCubbin (1989) in that, "Strong families foster predictable family routines, rituals and other times together" (453).

It was at this point that Zachary's parents started to learn sign language and teach Zachary sign language as a means of communicating. This caused uneasiness among family members because some family members adapted well, while others had difficulty learning the sign language. Eventually, the family members worked together and established a much needed communication link with Zachary. As Zachary's family united and provided mutual support, their recovery actually brought them to a higher level of reorganization. "Either by trial and error or (when possible) by thoughtful planning, family members usually arrive at new routines and reciprocal expectations" (Lamanna and Riedmann, 448).

Usually the first crisis is when a child is initially identified as having a disability. "Other crises may occur during times of transition, such as (1) at school-entry age, (2) during adolescence, (3) when leaving school, and (4) when parents grow older" (qtd. in Brown, Goodman & Kupper, 1997). This held true for Zachary's parents when they had to relive the whole grieving process and readjust their lives again while preparing for school entry. A psychoeducational evaluation done in preparation for school entry diagnosed Zachary with Asperger's Syndrome (a high-functioning autism). This required Zachary's parents to conduct additional research. The pressures of finding appropriate schooling and determining educational goals for Zachary preoccupied more of their time than usual.

"Having a child with Asperger's Syndrome can change the parents' social life, conversation and the atmosphere at home" (Attwood, 144). Zachary's parents reduced social contact because they got tired of explaining and apologizing for Zachary's unusual behavior. Additionally, the more organized the home environment was for Zachary, the less distressed he became. If Zachary's parents did not prepare Zachary for any change in his environment, he would rely on instinctual behavior as a survival technique to the chaos he was experiencing. This instinctual behavior (fight, fright or flight) was an exhausting behavior that drained the entire family. Consequently, all the family members began to understand the nature of his special needs and as a way of coping, accepted the regimentation as a way of life.

Naseef points out that "living with and raising an exceptional child is not something that you merely accept once and get it over with. The impact on daily life extends through the entire family-mother, father, child, and siblings" (46). Martha G. Welch, M.D. in Holding Time wrote, "The handicapped child simply takes extra attention. It is impossible for the normal sibling to avoid feelings of jealousy about the extra care, rage about his own unmet needs, and then guilt for having the jealousy and rage" (206). Zachary's parents realized this and attempted to understand their feelings.

"We know from the experiences and the findings of research that having a child with a disability powerfully affects everyone in the family" (Brown, Goodman & Kupper). The impact on siblings varies depending upon the child, but there are common threads. Zachary's parents posed a question to each of Zachary's siblings, "How does it make you feel to have a brother with special needs?" The responses were as follows:

A common thread is that the experience of having a special needs sibling has taught them to accept other people as they are and to treat everyone with positive regard. "Giving everything and expecting nothing in return-no ballet recitals, no home runs, no A's on the report card-is the lesson that a child with a disability teaches and perhaps forces a family to learn" (Naseef, 50).

Lamanna and Riedmann explain that an extended family is a valuable source of support for families in a crisis (457). Zachary's parents experienced mixed messages from their extended family, especially from the grandparents. One set of grandparents was supportive and did whatever was necessary to help the entire family. They wanted information about Zachary's special needs and attempted to understand them. The other set of grandparents had difficulties understanding Zachary's special needs and felt his behavior was manipulating.

Brown, Goodman and Kupper noted that grandparents are often "greatly affected by the birth of a child with a disability; the pain they feel may be two-fold-pain for their grandchild and pain for you, their own child." With this in mind, Zachary's parents had to adjust their way of dealing with each grandparent based on what stage in the grieving process each grandparent was experiencing. Zachary's parents had to adjust to the idea of having a child with a disability as well as help family and extended family adjust.

"The ABC-X model states that A (the stressor event) interacting with B (the family's ability to cope with a crisis, their crisis-meeting resources) interacting with C (the family's appraisal of the stressor event) produces X (the crisis)" (Lamanna and Riedmann, 449). Zachary's story provided an example of how one family coped with stressors and crises using the theory of the ABC-X model. Communication and adaptability were critical to keeping Zachary's family together through this crisis. The "desire" to want the family to stay together was at the core of facing this crisis, as well as any other crisis the family encountered. Zachary's parents did not choose this experience, which they would have given anything to avoid, but it has made them different, it has made them better.

 ______________________________

1. In establishing the ABC-X model, this example would be "A," the stressor event.
2. A research paper written by this author explaining sensory integration dysfunction can be found at http://home.ptd.net/~blnelson.
3. A sensory diet is using various therapeutic techniques throughout the day that will meet the sensory input the child's body needs. One specific technique involves brushing the entire body with a surgical brush and applying joint compressions every two hours to help regulate sensory input and desensitize tactile issues.
4. In establishing the ABC-X model, this example would be "C," the family's appraisal of the stressor event.
5. In establishing the ABC-X model, this example would be "B," the family's ability to cope with a crisis, their crisis-meeting resources.

Attwood, Tony. Asperger's Syndrome: A Guide for Parents and Professionals. Philadelphia, PA: Jessica Kingsley Publishers, Ltd. 1998.

Brown, Carole, Ph.D., Samara Goodman, M.A., Lisa Kuppler, NICHCY. "The Unplanned Journey: When You Learn That Your Child Has a Disability." NICHCY News Digest. Feb. 1997 http://www.kidsource.com/NICHCY/parenting.disab.all.4.4.html>.

Johnson, Barbara. Pain is Inevitable but Misery is Optional: So, Stick a Geranium in Your Hat and Be Happy! Dallas, TX: Word Publishing. 1990.

Lamanna, Mary Ann and Agnes Riedmann. Marriages and Families: Making Choices in a Diverse Society. 6^th ed. Belmont, CA: Wadsworth Publishing Company. 1997.

Naseef, Robert A., Ph.D. Special Children, Challenged Parents: The Struggles and Rewards of Raising a child with a Disability. Secaucus, NJ: Carol Publishing Group. 1997.

Quinn, Dr. Phil E. The Well-Adjusted Child: How to Nuture the Emotional Health of Your Children. Nashville, TN: Thomas Nelson Publishers. 1986.

Scherer, Marcia J. Living in the State of Stuck: How Technology Impacts the Lives of People with Disabilities. 2^nd ed. Cambridge, MA: Brookline Books. 1996.

Welsh, Martha G., M.D. Holding Time. New York, NY: Simon & Schuster. 1989.