Caring for a disabled child

Caring for all of your children when one has a disability.

Two very different stories of sibling experience crossed my desk this morning. Both were from parents of a child with disability. One written and one conversational.

The first was a parent blog where the mother had written that her other children sometimes say to her “Sam is your favourite child”. I’m sure every sibling feels this way from time to time, regardless of disability in the family. However, instead of reflecting on what her children might mean by their statement and thinking about how she might support them, she ignored their comment and spent a whole page justifying her total focus on her child with disability. How he needs her total care and that she advocates for him every day. She ‘fights for the underdog as that is what parents do, right’? And made it clear that her other children don’t require as much energy or fighting for, because they can advocate for themselves. Clearly her child with disability can’t do this for themselves. 

Disabled Young Adult

The mother went on to say that she shows her other children love, through the daily sacrifice of laying down her life and caring for their brother with disability. This mother is a writer and regular blogger and her stories of her disabled child are all consuming. 

When the other children try to express that they feel ‘less than’ in their family, they often feel ignored or overlooked. These childhood experiences can be stored away in their subconscious for life, even if later, as they mature, they understand the ‘why’. I regularly hear siblings talk about their lifelong self-doubt, lack of worth etc. Talk of learning to put the needs of others first, denying their own, and this leading to longer term issues in adult relationships.

We all, and especially siblings, understand the sacrifices parents make to ensure the best for their child with disability. It is natural to be a ‘fighting warrior’ for a child who is, or seems to be, more vulnerable. But it doesn’t have to be ‘either/or’.

Teen Boy With A Disability Sibling 

All children need love and attention from parents, it forms part of our basic human needs.. An acknowledgement of how a child is feeling can go a long way. ‘Yes, I know it can be hard for you too and it probably does feel that he’s my favourite sometimes – I do have to spend a lot of time with your brother. But please know you are loved and important too. Why don’t I pick you up early from school and we will go for ice-cream?’

The other story came from a mum who despite having many children, some of whom have significant additional needs, still finds time to help each child feel special. She has what she calls a ‘spoiling day’ each school term with each of her children. Each child can choose what activity they do together – just the two of them. This approach has worked so well for this Mum, that ‘spoiling day’ has continued into adulthood. It doesn’t have to cost the earth – time at the beach, baking, watching movies at home. This family is growing together in strength. The siblings have a sense of self-worth and are more likely to understand and not resent the time needed for the child with disability. The relationships between siblings, including those with disability, are therefore likely to be stronger.

A boy with down syndrome bakes cakes with his sister in the kitchen. 

Of course, some parents might find this commitment too much, with the constant juggle of life’s day to day expectations, but even small amounts of time each day, say at the end of the day when others are in bed, where a sibling can have the full attention of a parent, are beneficial.  Feeling seen, heard and appreciated are important for any child’s development and wellbeing. You can explore more via our SibWise course.

If your child says something like ‘you love him more’ or ‘I wish I had a disability’, try to think about the feelings that lie behind the words. Do they feel left out or do they think, in their child’s mind, that there seems to be definite advantages (time with Mum or Dad, special gifts from others) in having a disability. As Catherine exclaims to her Dad in Cynthia Lord’s book, Rules, ‘Maybe he does need you more than me, but that doesn’t mean I don’t need anything at all!’. Help your sib children explore the feelings and give them reassurance, both in words and actions, that they are important to you too. Such efforts will come back to you in spades. Get our free ebook if children are very young?

About Kate Strohm

After several careers as a hospital scientist, health educator, counsellor and print/radio journalist, Kate founded Siblings Australia in 1999. Since then she has developed a national and international reputation for her work with siblings, parents, and professionals. Her book Siblings: Brothers and Sisters of Children with Disability (Wakefield Press, 2002, revised edition 2015) has been published in Australia, the US and UK and translated into Korean. Her only sister lived with cerebral palsy.

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