Parenting a Child with Down Syndrome Essay Example

and physical resources to the extent that they may become increasingly worn down by the challenges of parenting.

The burdens that are faced by parents are particularly heavy if their children do pose behavioral, emotional and communication problems. Most of such difficulties are experienced by parents that have children with autistic spectrum disorders. The demands that are related towards raising a child with autistic spectrum disorder such as down syndrome are particularly high. The most significant sources of stress that are experienced by the parents of these children as noted down include; the permanency of the condition, insufficient professional support and the disapproval of the child’s behavior demonstrated by the family members, and society in general.

Being a parent has been depicted as a juxtaposition of experiences from joy to stress especially when facing the challenges of daily life (Sari et al., 2006). Raising a child or children with intellectual disability does present with parents’ additional challenges. There are instances of higher stress, anxiety as well as depression have been reported in parents and caregivers of children that have intellectual disabilities than in parents that are rearing typically developing children.

A large body of research has indicated that among parents of children that have intellectual disability, parental stress is much greater for the parent that is the primary caregiver and in most cases the majority of them are mothers. Having a child or children with intellectual disability does require adjustment to a new life role of being a care taker as well as adapting to the needs of the child. The changes that need to be implemented include modified work patterns as well as social relationships are the

factors that influence stress and coping of the new mothers. This paper presents forth the challenges that the parents of children having down syndrome the challenges they undergo towards parenting these children, the stresses and coping strategies that they employ and lastly the methods that have been identified to be effective towards addressing the problems these children undergo through (De Falco et al., 2010).

Literature Review

In a study by Gilmore and Cuskelly, Parenting Satisfaction and Self-Efficacy: A Longitudinal study of mothers of children with down syndrome discusses that parents rearing children with down syndrome overtime do adapt to the needs of their child having a disability by becoming stronger psychologically as well as feeling increasingly competent in their parenting as they do successfully meet the challenges of their roles. The issue of family stress being the main focus in most studies of parental adaptation was linked towards the sense of competence that the parents feel in relation to their own parenting skills. One particular study of mothers of adult children that were having intellectual disability did show that the satisfaction with the parenting role was a key element of the parenting sense of competence and was mediated by the relationship between the children’s adaptive behavior and the parenting stress as well as between family support and parenting stress (Gilmore & Cuskelly, 2012).

In parents that have children with intellectual disability such as from down syndrome, they have been observed to have higher feelings of competence being associated with lower stress. The overall body of literature suggests that there is the importance of parenting sense of competence as a mediating variable for a wide range of family and

child outcomes. Given the significance of parenting sense of competence and the existing limited knowledge about the developmental process across time for parents with children having down syndrome, there is need to consider how these children develop in their early years as well as how they cope when they reach the stage of puberty (Gilmore & Cuskelly, 2012).

Another study, How Will Having a Child with Down Syndrome Affect My Family indicates that families that have children with down syndrome have a far positive impact towards the member who is suffering from down syndrome through the positive attitudes that they shall exhibit. A good positive attitude will far out way any challenges or difficulties that may crop up while rearing this child. Most of the families that are affected by having members that are ailing from down syndrome they do share a stronger and closer ties which makes the experience of dealing with this disability being easy to cope up with as well as by being focused on the things that really do matter in life. Many other research studies that have explored how having a child with down syndrome does affect families. The studies have shown that while the families will experience additional challenges, their levels of well-being are just comparable to the families that do not have children with down syndrome (Hodapp et al., 2013).

What has been observed in these families is that they have high levels of resilience as well as they are able to thrive by having access to individual, family and community resources. The sisters and brothers of families with an individual with down syndrome, by them understanding and being aware

of the challenges that their sibling is undergoing, they tend to tremendously pride in the achievements and accomplishments that that particular ailing sibling undertakes in his or her life. In addition, the parents do often report that no matter the issues that the siblings might have towards their brother or sister suffering from down syndrome, they typically are very loyal and they still do their best towards defending and protecting him or her (Pillay et al., 2012).

In another article by Blacher et al., (2012), the authors identify that phenotypic characteristics of children with various syndromes were associated with intellectual disability. They indicate that there is evidence that shows that the extent of a child’s behavior problems does vary with the diagnostic syndrome. Moreover, the evidence suggests that these children characteristics are associated with parenting domains. For instance, in samples of young children and young adults, the presence of clinically significant problem behaviors was strongly related to the mother’s level of stress. There is little that is known about whether the variations in child characteristics or the syndromes do translate into actual differences in the actual differences of parenting behaviors. And although there are significant advances in the understanding of mother-child interactions, there is very little knowledge that has been developed towards the context of families raising children that have specific developmental disabilities (Dabrowska & Pisula, 2010). Its only recently that the topic of parenting behavior in the context of developmental disability has gained interest.

The core element that is being highlighted in this study as well as by other studies towards parenting children with down syndrome is the maternal responsiveness or sensitivity. At the bare minimum,

maternal responsivity can influence the language development that is important for all children especially those that are with developmental disabilities such as down syndrome which can delay and in rare cases prevent the development of language.

While comparing parents of children with other kinds of disabilities, parents of children with down syndrome, they generally did report less stress and greater reward. This is because the down syndrome phenotype was characterized with a pleasant personality and a less maladaptive behavior unlike in the children that had undifferentiated developmental disabilities. Children with down syndrome when parented well they were observed to have higher rates of rudimentary social behaviors such as looking at the adults and smiling. It is these sociable personalities that on turn do influence parental behaviors. Parenting these children with down syndrome requires they be spoken to in a manner that will improve their mean length of utterance of words, teaching them different number of words and teaching them about different labels (Hsiao, 2014).

Parenting children with down syndrome and other developmental spectrum disorders requires maternal educations for the mother that are affected so as to equip them with the right skills that they will use towards rearing their children. This special education will serve the purpose of orienting these mothers to the challenges and issues they will have to undergo through since the affected children do require special needs unlike a typical child. The parents especially mothers need to be taught of the conventional therapeutic strategies that are there which they can utilize towards aiding the growth and development of their kids.

The parents need also to be equipped as to how they need to consider their

parenting behavior. It needs to be one that will significantly influence positively the child having down syndrome. Studies have indicated that mothers of children with specific disabilities might be more likely than the other mothers of typically developing children to adopt a more directive interactive style that will serve in response of the absence of clear and frequent signals from their children (Pillay et al., 2012). What has been noted is that if there a delays or deficits in the interactive social signaling within young children, there was then a correspondingly greater use of controlling or directive behavior being employed by their mothers.

Current research concerning families of children with down syndrome has actually shifted from an emphasis of the pathology to one which emphasizes on strength and resilience in the families. Parenting a child with down syndrome nowadays is not necessarily a negative experience for the family. What however was noted to be critical is that the impact of children with these disabilities in these families did depend on the available resources especially social support of the family functioning. This social support is actually a multifaceted concept that does comprise of both a functional and structural component. The structural component does include an informal support that will be governed by the obligation norms as well as affiliations.

While the for formal support did reflect paid healthcare services and the size of social networks as well as the frequency of contact with network members. The functional support that is required towards parenting the children having down syndrome does refer to the informational, emotional and instrumental assistance that is provided to the individuals (De Falco et al., 2010).

As for social support, it can be derived from friends, relatives and non-professional helping sources. As for the formal sources of support, they include the healthcare professionals as well as other health care organizations. The important source of support is the spouse who is one of the most valued source towards the parenting of these children with down syndrome.

As it has been indicated from previous research, the majority of parents that had children with down syndrome did believe that the expression of concern as well as understanding that they did perceive from relatives and the friends did empower them towards validating their values and roles so as to cope successfully with the challenges of raising these affected children. However, most often who they feel dissatisfied about is the professional competence that is insensitive, has poor communication, interventions that are limited as well as service programs such as the early education system (De Falco et al., 2010). The downside of the informal support was noted that having fewer informal supports meant there was poorer family functioning and generally the support from the health care providers was often considered as not being very helpful.

Conclusion

In conclusion, it can be observed that parenting a child with down syndrome is a challenging task as it does require the parents to be observant as well as keen by providing the best parenting possibly they can so as to make the lives of their children to be more comfortable. The parents first need to learn how they can cope with stress and other challenges wrought by this condition in order to fully appreciate that their children irrespective of the condition they are

ailing, they need cooperate and learn how they will handle the children for a lifetime through positive nurturing and rearing. The children also need to be given special attention so as they can quite cope up with the condition in a manner that is bearable and humanly.

References

• De Falco, S., Esposito, G., Venuti, P., & Bornstein, M. H. (2010). Mothers and Fathers at Play with their Children with Down Syndrome: Influence on Child Exploratory and Symbolic Activity. Journal Of Applied Research In Intellectual Disabilities
• Hodapp, R. M., Ly, T. M., Fidler, D. J., & Ricci, L. A. (2001). Less Stress, More Rewarding: Parenting Children With Down Syndrome. Parenting: Science & Practice
• Pillay, D., Girdler, S., Collins, M., & Leonard, H. (2012). 'It's not what you were expecting, but it's still a beautiful journey': the experience of mothers of children with Down syndrome. Disability & Rehabilitation
• Hsiao, C. (2014). Family demands, social support and family functioning in Taiwanese families rearing children with Down syndrome. Journal Of Intellectual Disability Research
• D?browska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal Of Intellectual Disability Research
• Blacher, J., Baker, B. L., & Kaladjian, A. (2013). Syndrome Specificity and Mother-Child Interactions: Examining Positive and Negative Parenting across Contexts and Time. Journal Of Autism And Developmental Disorders
• Gilmore, L., & Cuskelly, M. (2012). Parenting satisfaction and self-efficacy: A longitudinal study of mothers of children with Down syndrome. Journal Of Family Studies
• Sari, H. Y., Baser, G., & Turan, J. M. (2006). Experiences of mothers of children with Down syndrome. Paediatric Nursing