Siblings of Children With A Disability: What Parents Need to Know

As parents, we’re constantly concerned with doing the best for our children; with the time, resources and energy we have. And as parents of a child with a disability, much of life is focussed on providing additional support to meet their needs. Extra time, different rules and more appointments. With so much focus on a child with a disability, how do we make sure we’re meeting the needs of their siblings?

Often, it’s the sibling of the child with a disability that presents as the “good child.”  Due to  their attunement to the needs of their brother or sister, the “good child” will present as so capable, self-directed and frankly – easy – that parents may not give them as much attention as they ideally need. I know this, not just as a psychologist who works in this area, but also because I am the sibling of a person with a disability.

I want to state upfront that I adore my (now adult) brother. He is truly a gift in my life and for our family. Because my brother has needed extra care and support through his life (and mine), I’ve developed an acute understanding of the experience of siblings of children with disabilities. This post addresses exactly what parents need to be aware of, along with some practical tips, to embrace the gifts and work with the challenges that siblings of a child with disabilities face.

What challenges do siblings face?

Attention

Children with disabilities tend to get more attention than other children within the family. This is to be expected. Their needs are different. How can parents ensure these siblings get as much attention, when they are likely feeling stretched to the limits most days? It may be unrealistic to aim for equal time, and since these children often become independent and self-directed they don’t necessarily demand extra attention from their parents. Therefore it’s crucial to actually schedule regular one-to-one time in the diary, the same way you would schedule in a medical appointment for the child that has additional needs.

The time you schedule in does not need to be huge chunk either, but it does need to be one on one, regular and consistent. It is simply time spent for connection. It may look like 20 minutes each evening or 1 hour each week devoted to one-on-one time with a parent. This isn’t a set prescription, but it is vitally important so that your son and daughter knows they matter. It is also preventative, since these siblings tend to minimise their own problems because the family has enough to deal with. Scheduling in this time for connection means your child has the time and space to air concerns and worries they have, so these don’t escape your notice.

Extra Responsibility

Siblings of children with a disability, by necessity, become extremely responsible and helpful children. They are viewed by their parents as capable and sometimes they are seen as more capable than they actually are. As parents it can be tempting to rely on siblings to provide additional care for their brother or sister, but this can force them to grow up too soon. Even if they seem capable of this extra responsibility, I strongly advise reviewing this aspect of their life regularly. If you need support on what is and isn’t appropriate, chat to your psychologist or therapist.

Coping With Big Feelings

Most people respond really kindly to people with a disability. However, some people do not. As parents of a child with a disability you’ve likely had a mixture of experiences. Your other child or children are also coping with reactions from strangers out in public. As much as they love their brother or sister, there may be times where they have to navigate strong negative emotions (e.g., anger at someone’s response to their sibling or discomfort about the additional attention that comes with being different).

The scheduled one-to-one time you spend with the sibling or siblings is important, as this is a time they may work through feelings and reflect on experiences. It’s something beautiful that you can do together. Without this time and space, however, children may internalise those feelings and they may build up over time.

It’s not doom and gloom however. Being the sibling of a child with disability brings many gifts. In fact, children with disabilities are a gift.

So what gifts do siblings receive?

Empathy and compassion

Without a doubt, the sibling of a child with a disability will develop greater empathy and compassion than their peers. They will witness firsthand the struggles of people who are different and this is an enormous gift for our community. Siblings tend to be very loving and caring and we need more love in the world.

Resilience

Families of children with additional needs face extra pressures and challenges. And we’re stronger for it. According to a University of Melbourne study on childhood resilience, resilience is defined as “the ability to cope or ‘bounce back’ after encountering negative events, difficult situations, challenges or adversity, and to return to the same level of emotional wellbeing….also the capacity to respond adaptively to difficult circumstances and still thrive” Simply by being a sibling of a child with a disability, they are developing resilience that will enhance their capacity to cope throughout their life. This cannot be underestimated. I want to emphasise these gifts because some families may get stuck in the challenges.

Advocates for Inclusive Communities

Not only do siblings develop compassion, empathy and resilience, which are all important, they tend to go on to advocate for inclusive communities. Within their school, sporting club or later — in their workplace — these siblings will be the ones who continually fight for respect, inclusivity and understanding for all: they’ll challenge discrimination and be champions of social justice.   Who are the people building a better world? It’s likely  these children. So let’s ensure they get the attention, level of responsibility and support they need to thrive and advocate for a kinder world.

Final Thoughts

With hindsight I can now appreciate all of the things about my brother (who has an intellectual disability, hearing impairment and a few other diagnoses) that I once found challenging when we were younger. I love his big personality and exuberant greetings to everyone he meets and his tendency to offer non-discriminant hugs to everyone. As a young and very reserved child I used to cringe at this but now I see him as a person with an amazing capacity to love others regardless of how they treat him. My brother doesn’t worry about other people’s perceptions of him, he doesn’t judge, he doesn’t worry about money or material items. He just wants to connect with others and to make them feel good. I admire his purity of heart.  Shouldn’t we all strive to be a little more like him?


About the Author: Dr Nicole Carvill (BA(Hons) PhD MAPS) 

Nicole is a psychologist, presenter, author and mother, passionate about helping children/adults to understand how they learn best and to assist them to gain the skills they need to thrive. She is especially passionate about the impact of memory and attention on learning and the best methods currently available to address those difficulties. Nicole is the author of 10 Little Known Factors That Could Affect Your Child’s School Performance” which includes an introduction into mindset, neuroplasticity, memory, organisation, attention, mindfulness and meditation. 

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Lead with warmth and confidence: ‘Yes I know this feels big, and yes I know you can handle it.’ 

We’re not saying they’ll handle it well, and we’re not dismissing their anxiety. What we’re saying is ‘I know you can handle the discomfort of anxiety.’ 

It’s not our job to relive this discomfort. We’ll want to, but we don’t have to. Our job is to give them the experiences they need (when it’s safe) to let them see that they can handle the discomfort of anxiety. 

This is important, because there will  always be anxiety when they do something brave, new, important, growthful. 

They can feel anxious and do brave. Leading with warmth and confidence is about, ‘Yes, I believe you that this feels bad, and yes, I believe in you.’ When we believe in them, they will follow. So often though, it will start with us.♥️
There are things we do because we love them, but that doesn’t mean they’ll feel loved because of those things.

Of course our kids know we love them, and we know they love us. But sometimes, they might feel disconnected from that feeling of being ‘loved by’. As parents, we might feel disconnected from the feeling of being ‘appreciated by’.

It’s no coincidence that sometimes their need to feel loved, and our need to feel appreciated collide. This collision won’t sound like crashing metal or breaking concrete. It will sound like anger, frustration, demanding, nagging. 

It will feel like not mattering, resentment, disconnection. It can burst through us like meteors of anger, frustration, irritation, defiance. It can be this way for us and our young ones. (And our adult relationships too.)

We humans have funny ways of saying, ‘I miss you.’

Our ‘I miss you’ might sound like nagging, annoyance, anger. It might feel like resentment, rage, being taken for granted, sadness, loneliness. It might look like being less playful, less delighting in their presence.

Their ‘I miss you’ might look like tantrums, aggression, tears, ignoring, defiant indifference, attention-seeking (attention-needing). It might sound like demands, anger, frustration.

The point is, there are things we do because we love them - cleaning, the laundry, the groceries, cooking. And yes, we want them to be grateful, but feeling grateful and feeling loved are different things. 

Sometimes the things that make them feel loved are so surprising and simple and unexpected - seeking them out for play, micro-connections, the way you touch their hair at bedtime, the sound of your laugh at their jokes, when you delight in their presence (‘Gosh I’ve missed you today!’ Or, ‘I love being your mum so much. I love it better than everything. Even chips. If someone said you can be queen of the universe or Molly’s mum, I’d say ‘Pfft don’t annoy me with your offers of a crown. I’m Molly’s mum and I’ll never love being anything more.’’)

So ask them, ‘What do I do that makes you feel loved?’ If they say ‘When you buy me Lego’, gently guide them away from bought things, and towards what you do for them or with them.♥️
We don’t have to protect them from the discomfort of anxiety. We’ll want to, but we don’t have to.

OAnxiety often feels bigger than them, but it isn’t. This is a wisdom that only comes from experience. The more they sit with their anxiety, the more they will see that they can feel anxious and do brave anyway. Sometimes brave means moving forward. Sometimes it means standing still while the feeling washes away. 

It’s about sharing the space, not getting pushed out of it.

Our job as their adults isn’t to fix the discomfort of anxiety, but to help them recognise that they can handle that discomfort - because it’s going to be there whenever they do something brave, hard , important. When we move them to avoid anxiety, we potentially, inadvertently, also move them to avoid brave, hard, growthful things. 

‘Brave’ rarely feels brave. It will feel jagged and raw. Sometimes fragile and threadbare. Sometimes it will as though it’s breathing fire. But that’s how brave feels sometimes. 

The more they sit with the discomfort of anxiety, the more they will see that anxiety isn’t an enemy. They don’t have to be scared of it. It’s a faithful ally, a protector, and it’s telling them, ‘Brave lives here. Stay with me. Let me show you.’♥️
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#parenting #childanxiety #anxietyinkids #teenanxiety
We have to stop treating anxiety as a disorder. Even for kids who have seismic levels of anxiety, pathologising anxiety will not serve them at all. All it will do is add to their need to avoid the thing that’s driving anxiety, which will most often be something brave, hard, important. (Of course if they are in front of an actual danger, we help anxiety do its job and get them out of the way of that danger, but that’s not the anxiety we’re talking about here.)

The key to anxiety isn’t in the ‘getting rid of’ anxiety, but in the ‘moving with’ anxiety. 

The story they (or we) put to their anxiety will determine their response. ‘You have anxiety. We need to fix it or avoid the thing that’s causing it,’ will drive a different response to, ‘Of course you have anxiety. You’re about to do something brave. What’s one little step you can take towards it?’

This doesn’t mean they will be able to ‘move with’ their anxiety straight away. The point is, the way we talk to them about anxiety matters. 

We don’t want them to be scared of anxiety, because we don’t want them to be scared of the brave, important, new, hard things that drive anxiety. Instead, we want to validate and normalise their anxiety, and attach it to a story that opens the way for brave: 

‘Yes you feel anxious - that’s because you’re about to do something brave. Sometimes it feels like it happens for no reason at all. That’s because we don’t always know what your brain is thinking. Maybe it’s thinking about doing something brave. Maybe it’s thinking about something that happened last week or last year. We don’t always know, and that’s okay. It can feel scary, and you’re safe. I would never let you do something unsafe, or something I didn’t think you could handle. Yes you feel anxious, and yes you can do this. You mightn’t feel brave, but you can do brave. What can I do to help you be brave right now?’♥️

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