Thinking of having another child to care for your child with disability? (Part 8)

Autism Sibling
75% of siblings who act as caregivers for an adult with a developmental disability say that caring is their full-time job

This is Part 8 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

Jess brought up some important food for thought in her last blog…should a parent plan to have another child to become a carer for their child with a disability? That’s a difficult question to answer, since there so many variables need to be taken into account.

Here are the first two important questions to ask yourself before making your decision:

  1. What if the sibling isn’t willing to care for their sibling? Assuming that the sibling will be able to care for the child with a disability, one needs to consider whether the child will be willing to care for their sibling, and to what extent. Baby making being quite the lottery, it’s impossible to predict what temperament, personality and interests a sibling will have. On the psychological end, it is also important to consider the impact of the perceived responsibility of having to care for a sibling on a child, such as increased stress.
  2. What if the second child doesn’t have the skills needed to be a carer? Depending on the diagnosis, there may be a chance that a sibling would have the similar needs as the first child. A study published in Pediatrics (Ozonoff et al., 2011) showed that there is an almost threefold increase in risk for siblings of children with autism to also develop ASD; this risk was particularly high for male siblings and those who had more than one affected sibling. Research also shows that parents who have had one child with cerebral palsy, the risk of recurrence for cerebral palsy was more than nine-fold for a subsequent sibling (Tollanes et al., 2014). When a child’s disability is not genetically-related (for example, for a child with a traumatic brain injury), this would obviously not apply.

Now, maybe you always dreamt of having a large family? Or the joys of having a child, no matter what their abilities or interests are, is more important to you than the potential risk? These are important factors to take into account, as they will change your personal sense of satisfaction and well-being as a parent. The important distinction I would make would be whether you’re thinking of having another child, or planning to have a carer for your child with disability. A survey conducted in 2012 for Easter Seals showed that 75% of siblings who act as caregivers for an adult with a developmental disability say that caring is their full-time job. Moreover, 30% say they receive no emotional, physical or financial support from other friends and family. Ensuring that there is some support in place for the caregiving sibling would therefore be crucial. On the bright side, though, 80% of respondents reported having a close relationship with their disabled sibling which had a positive impact on their life. It would be expected that a sibling who had a good relationship with the child with a disability might be more willing to become a carer (see my last blog post on how to promote a positive relationship between siblings). But there’s never any guarantee. This is an important and complex decision; it would be difficult to expect a child to automatically step in as the carer, but this is a place where the siblings and the individual with a disability should be involved in the decision-making.

Don’t miss on our last week of siblings’ blogs, we’ll discuss the role of siblings in fostering independence!

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