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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For way too long, there’s been an idea that discipline has to make kids feel bad if it’s going to steer them away from bad choices. But my gosh we’ve been so wrong. 

The idea is a hangover from behaviourism, which built its ideas on studies done with animals. When they made animals scared of something, the animal stopped being drawn to that thing. It’s where the idea of punishment comes from - if we punish kids, they’ll feel scared or bad, and they’ll stop doing that thing. Sounds reasonable - except children aren’t animals. 

The big difference is that children have a frontal cortex (thinking brain) which animals and other mammals don’t have. 

All mammals have a feeling brain so they, like us, feel sad, scared, happy - but unlike us, they don’t feel shame. The reason animals stop doing things that make them feel bad is because on a primitive, instinctive level, that thing becomes associated with pain - so they stay away. There’s no deliberate decision making there. It’s raw instinct. 

With a thinking brain though, comes incredibly sophisticated capacities for complex emotions (shame), thinking about the past (learning, regret, guilt), the future (planning, anxiety), and developing theories about why things happen. When children are shamed, their theories can too easily build around ‘I get into trouble because I’m bad.’ 

Children don’t need to feel bad to do better. They do better when they know better, and when they feel calm and safe enough in their bodies to access their thinking brain. 

For this, they need our influence, but we won’t have that if they are in deep shame. Shame drives an internal collapse - a withdrawal from themselves, the world and us. For sure it might look like compliance, which is why the heady seduction with its powers - but we lose influence. We can’t teach them ways to do better when they are thinking the thing that has to change is who they are. They can change what they do - they can’t change who they are. 

Teaching (‘What can you do differently next time?’ ‘How can you put this right?’) and modelling rather than punishing or shaming, is the best way to grow beautiful little humans into beautiful big ones.

#parenting
Sometimes needs will come into being like falling stars - gently fading in and fading out. Sometimes they will happen like meteors - crashing through the air with force and fury. But they won’t always look like needs. Often they will look like big, unreachable, unfathomable behaviour. 

If needs and feelings are too big for words, they will speak through behaviour. Behaviour is the language of needs and feelings, and it is always a call for us to come closer. Big feelings happen as a way to recruit support to help carry an emotional load that feels too big for our kids and teens. We can help with this load by being a strong, calm, loving presence, and making space for that feeling or need to be ‘heard’. 

When big behaviour or big feelings are happening, whenever you can be curious about the need behind it. There will always be a valid one. Meet them where they without needing them to be different. Breathe, validate, and be with, and you don’t need to do more than that. 

Part of building resilience is recognising that some days and some things are rubbish, and that sometimes those days and things last for longer than they should, but we get through. First we feel floored, then we feel stuck, then we shift because the only choices we have we have are to stay down or move, even when moving hurts. Then, eventually we adjust - either ourselves, the problem, or to a new ‘is’. 

But the learning comes from experience. They can’t learn to manage big feelings unless they have big feelings. They can’t learn to read the needs behind their feelings if they don’t have the space to let those big feelings come back to small enough so the needs behind them can step forward. 

When their world has spikes, and when we give them a soft space to ‘be’, we ventilate their world. We help them find room for their out breath, and for influence, and for their wisdom to grow from their experiences and ours. In the end we have no choice. They will always be stronger and bigger and wiser and braver when they are with you, than when they are without. It’s just how it is.♥️
When kids or teens have big feelings, what they need more than anything is our strong, safe, loving presence. In those moments, it’s less about what we do in response to those big feelings, and more about who we are. Think of this like providing a shelter and gentle guidance for their distressed nervous system to help it find its way home, back to calm. 

Big feelings are the way the brain calls for support. It’s as though it’s saying, ‘This emotional load is too big for me to carry on my own. Can you help me carry it?’ 

Every time we meet them where they are, with a calm loving presence, we help those big feelings back to small enough. We help them carry the emotional load and build the emotional (neural) muscle for them to eventually be able to do it on their own. We strengthen the neural pathways between big feelings and calm, over and over, until that pathway is so clear and so strong, they can walk it on their own. 

Big beautiful neural pathways will let them do big, beautiful things - courage, resilience, independence, self regulation. Those pathways are only built through experience, so before children and teens can do any of this on their own, they’ll have to walk the pathway plenty of times with a strong, calm loving adult. Self-regulation only comes from many experiences of co-regulation. 

When they are calm and connected to us, then we can have the conversations that are growthful for them - ‘Can you help me understand what happened?’ ‘What can help you so this differently next time?’ ‘How can you put things right? Do you need my help to do that?’ We grow them by ‘doing with’ them♥️
Big feelings, and the big behaviour that comes from big feelings, are a sign of a distressed nervous system. Think of this like a burning building. The behaviour is the smoke. The fire is a distressed nervous system. It’s so tempting to respond directly to the behaviour (the smoke), but by doing this, we ignore the fire. Their behaviour and feelings in that moment are a call for support - for us to help that distressed brain and body find the way home. 

The most powerful language for any nervous system is another nervous system. They will catch our distress (as we will catch theirs) but they will also catch our calm. It can be tempting to move them to independence on this too quickly, but it just doesn’t work this way. Children can only learn to self-regulate with lots (and lots and lots) of experience co-regulating. 

This isn’t something that can be taught. It’s something that has to be experienced over and over. It’s like so many things - driving a car, playing the piano - we can talk all we want about ‘how’ but it’s not until we ‘do’ over and over that we get better at it. 

Self-regulation works the same way. It’s not until children have repeated experiences with an adult bringing them back to calm, that they develop the neural pathways to come back to calm on their own. 

An important part of this is making sure we are guiding that nervous system with tender, gentle hands and a steady heart. This is where our own self-regulation becomes important. Our nervous systems speak to each other every moment of every day. When our children or teens are distressed, we will start to feel that distress. It becomes a loop. We feel what they feel, they feel what we feel. Our own capacity to self-regulate is the circuit breaker. 

This can be so tough, but it can happen in microbreaks. A few strong steady breaths can calm our own nervous system, which we can then use to calm theirs. Breathe, and be with. It’s that simple, but so tough to do some days. When they come back to calm, then have those transformational chats - What happened? What can make it easier next time?

Who you are in the moment will always be more important than what you do.
How we are with them, when they are their everyday selves and when they aren’t so adorable, will build their view of three things: the world, its people, and themselves. This will then inform how they respond to the world and how they build their very important space in it. 

Will it be a loving, warm, open-hearted space with lots of doors for them to throw open to the people and experiences that are right for them? Or will it be a space with solid, too high walls that close out too many of the people and experiences that would nourish them.

They will learn from what we do with them and to them, for better or worse. We don’t teach them that the world is safe for them to reach into - we show them. We don’t teach them to be kind, respectful, and compassionate. We show them. We don’t teach them that they matter, and that other people matter, and that their voices and their opinions matter. We show them. We don’t teach them that they are little joy mongers who light up the world. We show them. 

But we have to be radically kind with ourselves too. None of this is about perfection. Parenting is hard, and days will be hard, and on too many of those days we’ll be hard too. That’s okay. We’ll say things we shouldn’t say and do things we shouldn’t do. We’re human too. Let’s not put pressure on our kiddos to be perfect by pretending that we are. As long as we repair the ruptures as soon as we can, and bathe them in love and the warmth of us as much as we can, they will be okay.

This also isn’t about not having boundaries. We need to be the guardians of their world and show them where the edges are. But in the guarding of those boundaries we can be strong and loving, strong and gentle. We can love them, and redirect their behaviour.

It’s when we own our stuff(ups) and when we let them see us fall and rise with strength, integrity, and compassion, and when we hold them gently through the mess of it all, that they learn about humility, and vulnerability, and the importance of holding bruised hearts with tender hands. It’s not about perfection, it’s about consistency, and honesty, and the way we respond to them the most.♥️

#parenting #mindfulparenting

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