3 Important Things Every Parent of a Special Needs Child Should Know

06/06/2017 02:17 pm ET
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What are the most important things to keep in mind when parenting a child with special needs? originally appeared on Quora - the place to gain and share knowledge, empowering people to learn from others and better understand the world.

Answer by Jane Chin (陳盈錦), studied at Roswell Park Cancer Institute, on Quora:

What may be “most important” to keep in mind when parenting a child with special needs can differ from family to family, but research of families with special needs children suggest some key trends and observations:

1. Mothers tend to bear the brunt of “burden of care,” BUT what is happening with Fathers is not well-researched.

A longitudinal study of over 200,000 Norwegian mothers and fathers of pre-school children with different special needs (spina bifida, cerebral palsy, and Down syndrome) showed that on average, mothers reported more sickness absence than fathers. There was a difference in number of maternal sick days between special needs (more with spina bifida/cerebral palsy than Down syndrome), suggesting a correlation between the demand of the child’s special need and increased maternal sick days.

In this study, fathers’ sickness absence was on average comparable to fathers without similar age group special needs children. The researchers noted the differences on mothers versus fathers based on sickness absences, and even cited several studies that suggests caring for a special needs child exerts more psychological stress on mothers than on fathers…. And this is where my “BUT” comes in:

It is entirely possible that we simply have not captured the true “stress markers” in fathers of special needs children. If the father is the primary wage earner in the family, having a special needs child means financial resources are more critical than ever, and fathers may simply not be able to “afford to take sick days” off. Thus measuring sickness absences is not a good indicator of the total “burden of care” on the father. Even measuring psychological stress may not be as good of an indicator, depending on how men may be conditioned express stress.

What I’d love to see are studies that look at physiological markers of inflammation and stress, such as amount of Interleukin (IL)-6 or IL-1b in these men compared with fathers without special needs children. I’d love to see longer term follow-up studies looking at level of heart disease or high blood pressure in these fathers.

I’d also love to see studies stratify same-sex parents of special needs children and see whether we’d see differences in sickness absence between “carer parent” versus “wage earner parent” as well as measuring biomarkers in these parents. Then we may get away from generalizations of “mothers versus fathers” and specify these effects as “carer parent” versus “wage earner parent” and the very real — and (I suspect) very different manifestations — of “burden of care” on each parenting role.

2. Special needs children can challenge a marriage, especially when “vulnerability factors” are present, but marriages can be resilient.

In a study that looked at the effect of having a child with autism spectrum disorder (ASD) on parents' couple problem-solving interactions, the magnitude of marriage strife in couples with special needs children is small compared with peers without special needs children, with the caveat that there are “vulnerability factors”.

The vulnerability factors that can challenge a marriage with a special needs child are:

  • household income
  • parents having a disability (in this case, ASD themselves)
  • multiple children with special needs

What is interesting is that these vulnerability factors affect mothers and fathers differently. In this study, lower household income and higher broader autism phenotype (BAP) tend to affect fathers. This may be due to feeling of financial burden on fathers and behaviors relating to their own autism phenotype (anxiety, rigidity) that causes conflicts with their partners.

These factors are called “vulnerabilities” because the researchers found that the magnitude is “small”. In other words, marriages are resilient and many parents of children with ASD are able to manage their relationship in the face of many stressors.

3. Online social support are avenues of learning and empowerment for parents of children with special needs.

Researchers from Indiana University conducted a Scoping Review of literature in several databases including Pubmed, Social Sciences Citation Index, Google Scholar, and Education Resources Information Center (ERIC). They identified that:

  • Texting
  • Mobile apps
  • Social media

are effective platforms of education and support for parents of children with special needs.

I am especially excited about Table 1, which shows access to web-based technology across socioeconomic and ethnic groups:

Access to information and online based support across these different groups are critical, especially for demographics who may experience financial hardship or cultural stigma.

In fact, according to this scoping review, African Americans are #1 in getting online via mobile phones, while Hispanics top other groups in Facebook use. Both are potential channels of web-based information and social support. There may be a dark side to this, however: the internet is fraught with misinformation and quackery, which means educating consumers about Quackery is more important than ever.

Sources:

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