Running Head: HOW A CHILD WITH A DISABILITY EFFECTS A MARRIAGE

How a Child with a Disability Effects a Marriage and Counseling Parents Who Have a Child With a Disability Gracie Mullins Samford University

HOW A CHILD WITH A DISIBILITY EFFECTS A MARRAIGE How a Child with a Disability Effects a Marriage and Counseling Parents Who Have a Child With a Disability Having a child with a disability will affect a family in some way, whether that is in a

negative way or positive way. Having a child with a disability will also be stressful, and can be in every situation. To begin research on counseling those marriages, I asked a few people what they believed would be the hardest part of having a child with a disability. The answers ranged from dealing with the fact that the child would never be normal to financial situations to not knowing what would happen to the child when the parents were no longer able to take care of the child. All of these situations are bound to happen when a child is born or diagnosed with a disability. However, I then rephrased my questions to specifically target marriages and spouses. How would a child with a disability affect a marriage? Would it make it better or worse, and what strains would be put on the marriage. It was interesting to see the facial expressions change when I changed the question. Many people think of the child when they think of a child having a disability, which is always a good thing, but many people do not think about how difficult these situations can be a marriage. Parents and marriages struggle with multiple stressful scenarios and every parent deals with that stress in a different way. When people deal with things in different ways, it could cause problems within the marriage because one spouse may not understand the other spouse like they wish that they would. There have been multiple articles written and studies done about autistic children and the counseling that those children need. However, there have been few articles written and studies done looking at the counseling and marriage and family therapy outcomes. Many people are concerned with the child in these situations, and not the family. According to Cindy Ferrini (2013), there are 80-85% of marriages that end in divorce when the stress

HOW A CHILD WITH A DISIBILITY EFFECTS A MARRAIGE becomes too high to handle in the marriage. This is a problem that is not addressed enough. Yes, the child needs to be taken care of in every situation. However, if the marriage is not taken care of, how will the child be taken care in the best way possible? Parents cannot properly give the child everything the child needs, if they themselves, are not giving the

marriage the proper respect and attention it needs. Cindy Ferrini (2013) used the metaphor of a trampoline when talking about a family. If there are five people sitting on a trampoline and one person makes even the slightest move, it affects every person on the trampoline. This is exactly how the family works, especially when a family has a special needs child. Every action can rock the whole family for the better or for the worse. Being a parent and being in a marriage already comes stress and that only increases with a child who has a disability. Studies have shown that parents who have a child with special needs are more likely to have depression and experience more stress than a parent with a normal developing child (Neely et.al, 2012). According to Shechtman and Gilat, there are many groups who offer support to families, but many of these groups are educational group meetings meaning that they inform parents on the unique problems that children with disabilities have and how to deal with those problems. However, there are not many groups who are there for the support aspect of having a child with special needs. Parents need help coping with all the stress that arises with having a special needs child. Parents are educated so much on what autism is, what a certain disability means, or how to help their child, that emotional stress can sky rocket. Marriage and Family Counselors need to understand that they must help families learn how to cope, learn how to manage, and learn how to take care of each other while also taking care of the child. When having a child with a disability, dreams for a child have been lost, so when receiving a diagnosis of any type of disability, parents will go through the stages of grief, just as someone has died in their family

HOW A CHILD WITH A DISIBILITY EFFECTS A MARRAIGE

has died (Luterman 2004). These parents and families will go through anger, guilt, and denial. Cindy Ferini (2013) used a shaken up coke metaphor to describe how these stages of grief will become a burden to everyone around the around the parents if they are not taken care of properly. If any form of grief is bottled up the pressure will get stronger and stronger. Eventually, that person may explode and it will be gross, sticky mess on everyone around them. That is why it is important to have a marriage and family therapist or a good support system to let out the emotions of living with a child with special needs. Given all of these problems and statistics, what can be done to help these families and marriages and how can marriage and family counseling help fewer marriages fail and make a more solid environment for the child. To first off help these struggling parents and marriages, there needs to be less of the education in classes and more of a people-based class and counseling session. Zipora Shechtman and Irit Gilat conducted a study on the effectiveness of group counseling in reducing stress. Their study found that parents who have a child with a disability are under a considerably high amount of stress than parents who have a typically developing child. Children present so many struggles daily to their parents such as behavioral problems, academic, social and emotional problems that parents need a way to let that stress out. These problems can lead to more problems in the marriage and in parent-child relationships. In educational group settings, parents are given information about the unique problems that children with disabilities have in different areas of their lives. Theses types of groups can focus on how to deal with certain issues when they arise; however, they are less focused on the emotions and the needs of the parents emphasizing content over process (Shechtman & Gilat, 2005). Shechtman and Gilat suggest a different type of counseling group they read about from Miller and Pritz (1990) in a study. This type of counseling group focuses on parents needs at

HOW A CHILD WITH A DISIBILITY EFFECTS A MARRAIGE broader range. These types of groups can provide opportunities for stress relief, emotional experiences, and personal awareness. Luterman (2004) said, It is when a group of parents

can meet and share their experiences that validation occurs and the healing process can begin. This type of group would go through three stages. In the first stage, parent would explore their thoughts and feelings. What this means is that parents talk to the counselors and other parents about the emotions and thoughts they have throughout each day while caring for their child. Next, the group develops insight (Shechtman & Gilat, 2005). Parents could ask themselves, Is it normal for me to feel this way? Wow, parents are going through the same things I am, and have the same stresses. Thirdly, after they have developed insight, they can make changes in their lives. This study was done to over a two-year period with looking at results to hopefully find that the people-oriented groups helped parent-child relationships more than the educational counseling groups. After looking at the results, the hypothesis was proven, and those results were supported by childrens perceptions of their own relationships with their parents. From this study, it was proven that parents receive more support from people-oriented counseling groups rather than educational groups. This tells readers, therapists, and parents that parents need a way out of stress and the emotional roller coaster. Talking to other parents in the same situation as other parents helps the coping process when dealing with the stressful situation of raising a child with a disability. Ramisch (2012) states that parents who participate in a support group have significantly lower stress in caregiving than parents who do not participate in a support group. Ramischs study also supports the study done by Shechtman and Gilat in 2005. Ramischs study focuses on marriage and family therapists working with parents whom a child with autism. Ramisch, from Michigan State University, suggests that therapists use the

HOW A CHILD WITH A DISIBILITY EFFECTS A MARRAIGE ABCX model. The ABCX model is a coping strategy used during the stressful times in life, and this scenario, it would be having a child with autism and all the emotional stress that it comes with. The A is the stressor strain put on the parent or marriage. The B is the intrafamily resources and C is the familys definition or perception on dealing with X, which is the crisis. When therapist or counselors use this strategy, they should be able to recognize each part of the ABCX model. The A, stressors and strains, could be a multitude of things on top each other. Therapists should be able to recognize the initial stressor, the stress that came beforehand, and how to deal with it (Ramisch 2012). These stressors could include the diagnosis of the disability, problem behaviors, financial hardships, or even unpredictability about the future. Ramisch (2012) found that 82% of parents saw the diagnosis of autism stressful to their families and over half were not satisfied with the process. Without a support group, the familys life can be shaken by the experience of diagnosis. The money involved in supporting the child can be a major stressor in a family. After paying for doctor visits, medications, therapy, and maybe even having to cut down on work hours themselves, parents can become very burdened. Lastly, the unpredictability of the future could always be in the back of a parents mind. Who will take care of my child when I am gone? Most parents

dream of raising a child in the best way they can to send them off to start a family of their own; however, caring for a special needs child becomes a lifetime commitment. This is when B of the ABCX model comes in, the resources the family has. Support to deal with these stressors can come in multiple forms such as faith, education, employment, family connections, marital satisfaction and communication. Family and close friends were found to be a familys major source of support during thee difficult times of stress. These families also said that emotional support and empathy were important in using their resources (Ramisch 2012). However, some

HOW A CHILD WITH A DISIBILITY EFFECTS A MARRAIGE

families can receive much support from family, friends, and support groups, but find nothing to be helpful. Part C comes in at this point, where therapists work with different coping strategies for families to help them in a time of crisis when dealing with their special needs child. There are two different coping strategies used in therapy. One of these is problem-focused coping which means the stressor is directly removed or altered. The other is emotion-focused coping which deals with using actions or thoughts to remove the negative feelings that resulted form the crisis (Ramisch 2012). However, Ramisch found that other research said that in parents who have children with autism, the emotion-based coping has a greater chance of leading to depression, isolation, and spousal relationship problems. Sometimes in emotionbased coping, parents replace the negative feeling with having hope that their child might be healed, the dream if having a normal child might have a chance, or even using drugs as a way out. As a therapist, it is important to infuse hope in a family that their child could have a significant life in different ways that they imagined and not instilling hope for a miracle of complete change (Ramisch 2012). As said earlier, there are few articles and studies dealing with effects of autism and other disabilities on a family and a marriage; however, Neely and other writers in the journal of Marital & Family Therapy, write that the effects on a family and the help they need should be just as important as getting help for the child. There are three periods of life that influence the stress level of families; these major periods are early childhood through elementary years, adolescence, and autism in adulthood (Neely et. al. 2011). The first stage where families may see stress is in early childhood. Things that families face during this time could be the diagnosis, coping, treatment decisions, and creating new routines. While diagnosing the child there can be multiple disagreements and tensions that arise between parents and extended

HOW A CHILD WITH A DISIBILITY EFFECTS A MARRAIGE family members. Some of these disagreements can also be between professionals who are diagnosing the impairment. During the process things may arise such as guilt, anger, and anxiety, which may result in defensiveness or denial (Nelly et. al. 2011). Ambiguity is also a common theme in families during the process. Neely (2012) states that it would be likely for

them to ask for a second or third opinion. Marriage and Family counselors should be qualified to support families during this time, but to also be able to help the family deal with the new outcomes, process, and come up with solutions and deciding how to handle the ambiguity as a team. When looking at adolescence, children develop sexual orientations all different types of wants and needs. These urge and desires are heightened when the child has autism. Parents struggle with the psychological changes of their child and new financial situations that may arise. A family therapist can help a family learn how to deal with the multiple changes that can occur and focus on the overall functioning of the family. How will the marriage and the family as a whole develop and emerge into new ways of coping with their child (Neely et. al. 2011). As the child changes, the family must also change. Emerging into adult can also be stressful because its a new stage where most families send their child off to college, off to get married, or off to get a career. Neely (2011) found that a counselor needs to work with a family to see

how the changes should occur. They need to reflect on what they have learned, what they have done right, and what they would like to do differently. Financial burdens may also arise when the child is over 21 because schools and insurance will stop providing financial support. Parents must work together with their counselor to come up with the best solution (Neely 2011). In summary, parents, marriages, and families as a whole will go through multiple trials when they have a child who has special needs. The question though is will these families go

HOW A CHILD WITH A DISIBILITY EFFECTS A MARRAIGE through the obstacles together, or will they let the stress and uncertainness break their family apart, and how can they not let that happen. To care for a child with special needs, the family and marriage need to be taken care of as well. Cindy Ferrini (2013) the keynote speaker at the Early Intervention and Preschool Conference said, A caretaker can not take car of another

human life if they cannot take care of their own life. When a couple or family goes to receive help, a therapist needs to be able to help them in multiple ways using the ABCX model. A therapist should be able to help the couple identify stressors that are contributing to the family besides the child with the disability. It may help for parents to list stressors, concerns, and fears on a sheet of paper and share them with their partner (Ramisch 2012). The coupe needs to begin to learn how to work as a team. Being consumed with something from the past will only prevent them from working together in the future (Ramisch 2012). Ferrini (2013) spoke about two strategies used when couples are frustrated with each other. Couples must speak to each other using the fact with fact concept and feeling with feeling concept. What this means is that if the wife is trying to convey her feelings about how overwhelmed she is to her husband, her husband should not respond with a fact about why she is so overwhelmed, but rather respond with a feeling as well and visa versa with the fact to fact concept. If a husband gives his wife a fact about needing their childs medication refilled, the wife should not respond with an emotion of defense about how tired, busy and overwhelmed she is, but rather responds with another fact. This concept will help couples in their frustrations and make working as team more possible. Ferrini (2013) also gave another step in dealing with frustration within marriages. During an argument or a moment of frustration, a couple should stop, look, and listen. They should stop and think about what is needed in the relationship at the moment, look at the situation that is happening around the marriage, and then listen to advice from the other

HOW A CHILD WITH A DISIBILITY EFFECTS A MARRAIGE person or the support system given to the marriage. Couples need to go from blaming the

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companion to listening to the companion. After helping the couple in terms of themselves and working as a team, a therapist should help the couple realize the resources that they have (Ramisch 2012). Ramisch (2012) writes about the Internet may be a convenient place to receive help, but the best help is from other parents. This is where the people-oriented counseling groups that Shechtman and Gilat (2005) looked at in their study. People help people. Ferrini (2013) said at the conference, People in our lives are here to help us and we to help them. Lastly, marriages will need counseling in learning how to cope with the disability together. A therapist should help the couple learn many different coping strategies they can use starting from an early age of the child. Some ways to respond to the X in the ABCX model or the crisis is to realize your partner may react differently at certain things but to let that affect their own feelings. It is important for each partner to tell the other exactly how he or she feels, especially in the early diagnosis. Another coping strategy that Ramisch (2012) suggests is to gain a sense of self. Many couples lose sight of themselves because they are so involved with helping their child; however, it is a priority to not lose sight of their own personal needs. Ferrini (2013) gives multiple examples of how not lose that sense of self. The marriage needs to be pampered, time should be taken as a couple, and time should be taken individually. There is an 80-85% divorce rate for parents who have a child with a disability (Ferrini 2013). It is vitally important for this rate to come down to meet the needs of the child. A marriage can be impacted greatly when the have a child with a disability and couples, individuals, family, support systems, and therapists should do everything they can to take down this number.

HOW A CHILD WITH A DISIBILITY EFFECTS A MARRAIGE References

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Ferrini, C. (Director) (2013, November 18). Unexpected Journey: The bumpy road that needs a lot of work! Early Intervention and Preschool Conference. Lecture conducted from United Cerebral Palsy, Birmingham. Luterman, D. (2004). Counseling families of children with hearing loss and special needs. Volta Review, 104(4), 215-220. Neely, J., Amatea, E., Echevarria-Doan, S., & Tannen, T. (2012). Working with families living with autism: potential contributions of marriage and family therapists. Journal of Marital and Family Therapy, 38(s1), 221-226. Ramisch, J. (2012). Marriage and family therapists working with couples who have children with autism. Journal of Marital and Family Therapy, 38(2), 305-315. Shechtman, Z., & Gilat, I. (2005). The effectiveness of Counseling groups in reducing stress of parents of children with learning disabilities.. Group Dynamics: Theory, Research, and Practice, 9(4), 275-286.