Should a sibling be the carer for a child with autism or other disabilities? (Part 7)

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Our family has realized that the designation of the ‘future carer’ role isn’t a one-time decision, nor is it necessarily an obvious one.

This is Part 7 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

Written by Jess Urcuyo

“Should we have a second child to become the carer for our disabled child?” – I recently read this question on a parent support Facebook group. Clearly, it was a parent who is desperately trying to plan for the likely situation that their child with exceptionalities will outlive them as parents. A parent who realizes their child may continue to be dependent on others for help after they themselves pass away or are unable to continue the parent-carer role. A parent who may not have considered the impact this thinking could have on the life of their second child.

In my family, I’m the only girl and I trained to be a pediatric therapist. Regardless of the life choices my siblings made, if stereotypes prevail, I would be the obvious choice to become the dedicated carer for my brother’s future, right?

But what about the sibling’s choice? In a society where our governments are ill-prepared to support the strengths and needs of an aging population with developmental delays and/or autism, should a sibling of a child with exceptionalities be expected to become their dedicated carer in future years when their parents have passed away?

What about the choice of the person with additional needs? What if they don’t have a good relationship with the sibling dedicated to be their carer in future years? What if they need a different style of support than that sibling is able to offer to ensure they continue to develop their independence?

Bearing in mind the challenges we’ve previously explored, that our siblings often experience with identity, self-advocacy, and assertiveness, I encourage parents to consider future planning for each child in the family as an individual. Some siblings, such as myself, feel well equipped to be the designated future carer and have a positive relationship with their sibling with exceptional needs (such as Autism). Other siblings may not feel as well placed, may not have a good relationship, or for many other reasons, may chose not to take this role. Some families may choose to collaborate to provide support for the sibling with exceptional needs so that the responsibility doesn’t fall to one individual.

Any end-of-life discussion has the potential to be a heavy weight on people’s minds. In the case of a sibling who is dependent on their parents for support, it is an important conversation that is best started sooner rather than later to ensure everyone’s voice is heard and continues to be heard as life situations change.

In our family we’ve realized that the designation of the ‘future carer’ role isn’t a one-time decision, nor is it necessarily an obvious one. It’s an open conversation that will be revisited as often as needed, with all parties involved having a clear voice. When the time comes, we hope we’ll make a decision that is right for everyone involved. A decision that supports the independence and life choices of all the siblings in our family.

Check pack tomorrow for part 8, where we discuss things to think about if you’re considering having another child to become a carer for their child with a disability.

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