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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It’s the simple things that are everything. We know play, conversation, micro-connections, predictability, and having a responsive reliable relationship with at least one loving adult, can make the most profound difference in buffering and absorbing the sharp edges of the world. Not all children will get this at home. Many are receiving it from childcare or school. It all matters - so much. 

But simple isn’t always easy. 

Even for children from safe, loving, homes with engaged, loving parent/s there is so much now that can swallow our kids whole if we let it - the unsafe corners of the internet; screen time that intrudes on play, connection, stillness, sleep, and joy; social media that force feeds unsafe ideas of ‘normal’, and algorithms that hijack the way they see the world. 

They don’t need us to be perfect. They just need us to be enough. Enough to balance what they’re getting fed when they aren’t with us. Enough talking to them, playing with them, laughing with them, noticing them, enjoying them, loving and leading them. Not all the time. Just enough of the time. 

But first, we might have to actively protect the time when screens, social media, and the internet are out of their reach. Sometimes we’ll need to do this even when they fight hard against it. 

We don’t need them to agree with us. We just need to hear their anger or upset when we change what they’ve become used to. ‘I know you don’t want this and I know you’re angry at me for reducing your screen time. And it’s happening. You can be annoyed, and we’re still [putting phones and iPads in the basket from 5pm] (or whatever your new rules are).’♥️
What if schools could see every ‘difficult’ child as a child who feels unsafe? Everything would change. Everything.♥️
Consequences are about repair and restoration, and putting things right. ‘You are such a great kid. I know you would never be mean on purpose but here we are. What happened? Can you help me understand? What might you do differently next time you feel like this? How can we put this right? Do you need my help with that?’

Punishment and consequences that don’t make sense teach kids to steer around us, not how to steer themselves. We can’t guide them if they are too scared of the fallout to turn towards us when things get messy.♥️
Anxiety is driven by a lack of certainty about safety. It doesn’t mean they aren’t safe, and it certainly doesn’t mean they aren’t capable. It means they don’t feel safe enough - yet. 

The question isn’t, ‘How do we fix them?’ They aren’t broken. 

It’s, ‘How do we fix what’s happening around them to help them feel so they can feel safe enough to be brave enough?’

How can we make the environment feel safer? Sensory accommodations? Relational safety?

Or if the environment is as safe as we can make it, how can we show them that we believe so much in their safety and their capability, that they can rest in that certainty? 

They can feel anxious, and do brave. 

We want them to listen to their anxiety, check things out, but don’t always let their anxiety take the lead.

Sometimes it’s spot on. And sometimes it isn’t. Whole living is about being able to tell the difference. 

As long as they are safe, let them know you believe them, and that you believe IN them. ‘I know this feels big and I know you can handle this. We’ll do this together.’♥️

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