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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Behaviour is never from ‘bad’. It’s from ‘big’. Big hungry, big tired, big disconnection, big missing, big ‘too much right now’. The reason our responses might not work can often be because we’ve misread the story, or we’ve missed an important piece of it. Their story might be about now, today, yesterday, or any of the yesterdays before now. 

Our job isn’t to fix them. They aren’t broken. Our job is to understand them. Only then can we steer our response in the right direction. Otherwise we’re throwing darts at the wrong target - behaviour, instead of the need behind the behaviour. 

Watch, listen, breathe and be with. Feel what they feel. This will help them feel you with them. We all feel safer and calmer when we feel our people beside us - not judging or hurrying or questioning. What don’t you know, that they need you to know?♥️
We all have first up needs. The difference between adults and children is that we can delay the meeting of these needs for a bit longer than children - but we still need them met. 

The first most important question the brain needs answered is, ‘Is my body safe?’ - Am I free from threat, hunger, exhaustion, pain? This is usually an easier one to take care of or to recognise when it might need some attention. 

The next most important question is, ‘Is my heart safe?’ - Am I loved, noticed, valued, claimed, wanted, welcome? This can be an easy one to overlook, especially in the chaos of the morning. Of course we love them and want them - and sometimes we’ll get distracted, annoyed, frustrated, irritated. None of this changes how much we love and want them - not even for a second. We can feel two things at once - madly in love with them and annoyed/ distracted/ frustrated. Sometimes though, this can leave their ‘Is my heart safe?’ needs a little hungry. They have less capacity than us to delay the meeting of these needs. When these needs are hungry, we’ll be more likely to see big feelings or big behaviour. 

The more you can fill their love tanks at the start of the day, the more they’ll be able to handle the bumps. This doesn’t have to be big. It just has to be enough. It might look like having a cuddle, reading a story, having a chat, sitting with them while they have breakfast or while they pat the dog, touching their back when they walk past, telling them you love them.

All brains need to feel loved and wanted, and as though they aren’t a nuisance, but sometimes they’ll need to feel it more. The more their felt sense of relational safety is met, the more they’ll be able to then focus on ‘thinking brain’ things, such as planning, making good decisions, co-operating, behaving. 

(And if this today was a bumpy one, that’s okay. Those days are going to happen. If most of the time their love tanks are full, they’ll handle when it drops a little. Just top it up when you can. And don’t forget to top yours up too. Be kind to yourself. You deserve it as much as they do.)♥️
Things will always go wrong - a bad decision, a good decision with a bad outcome, a dilemma, wanting something that comes with risk. 

Often, the ‘right thing’ lives somewhere in the very blurry bounds of the grey. Sometimes it will be about what’s right for them. Sometimes what’s right for others. Sometimes it will be about taking a risk, and sometimes the ‘right’ thing just feels wrong right now, or wrong for them. Even as adults, we will often get things wrong. This isn’t because we’re bad, or because we don’t know the right thing from the wrong thing, but because few things are black and white. 

The problem with punishment and harsh consequences is that we remove ourselves as an option for them to turn to next time things end messy, or as a guide before the mess happens. 

Feeling safe in our important relationships is a primary need for all of us humans. That means making sure our relationships are free from judgement, humiliation, shame, separation. If our response to their ‘wrong things’ is to bring all of these things to the table we share with them with them, of course they’ll do anything to avoid it. This isn’t about lying or secrecy. It’s about maintaining relational ‘safety’, or closeness.

Kids want to do the right thing. They want us to love and accept them. But they’re going to get things wrong sometimes. When they do, our response will teach them either that we are safe for them to come to no matter what, or that we aren’t. 

So what do we do when things go wrong? Embrace them, reject the behaviour:

‘I love that you’ve been honest with me. That means everything to me. I know you didn’t expect things to end up like this, but here we are. Let’s talk about what’s happened and what can be different next time.’

Or, ‘Something must have made this (wrong thing) feel like the right thing to do, otherwise you wouldn’t have done it. We all do that sometimes. What do you think it was that was for you?’

Or, ‘I know you know lying isn’t okay. What made you feel like you couldn’t tell me the truth? How can we build the trust again. Let’s talk about how to do that.’

You will always be their greatest guide, but you can only be that if they let you.♥️
Whenever there is a call to courage, there will be anxiety - every time. That’s what makes it brave. This is why challenging things, brave things, important things will often drive anxiety. 

At these times - when they are safe, but doing something hard - the feelings that come with anxiety will be enough to drive avoidance. When it is avoidance of a threat, that’s important. That’s anxiety doing it’s job. But when the avoidance is in response to things that are important, brave, meaningful, that avoidance only serves to confirm the deficiency story. This is when we want to support them to take tiny steps towards that brave thing. It doesn’t have to happen all at once.l and it doesn’t matter how long it takes. Brave is about being able to handle the discomfort of anxiety enough to do the important, challenging thing. It’s built in tiny steps, one after the other. 

We don’t have to get rid of their anxiety and neither do they. They can feel anxious, and do brave. At these times (safe, but scary) they need us to take a posture of validation and confidence. ‘I believe you, and I believe in you.’ ‘I know this feels big, and I know you can handle it.’ 

What we’re saying is we know they can handle the discomfort of anxiety. They don’t have to handle it well, and they don’t have to handle it for too long. Handling it is handling it, and that’s the substance of ‘brave’. 

Being brave isn’t about doing the brave thing, but about being able to handle the discomfort of the anxiety that comes with that. And if they’ve done that today, at all, or for a moment longer than yesterday, then they’ve been brave today. It doesn’t matter how messy it was or how small it was. Let them see their brave through your eyes.‘That was big for you wasn’t it. And you did it. You felt anxious, and you stayed with it. That’s what being brave is all about.’♥️
A relationally unsafe (emotionally unsafe) environment can cause as much breakage as as a physically unsafe one. 

The brain’s priority will always be safety, so if a person or environment doesn’t feel emotionally safe, we might see big behaviour, avoidance, or reduced learning. In this case, it isn’t the child that’s broken. It’s the environment.

But here’s the thing, just because a child doesn’t feel safe, doesn’t mean the person or environment isn’t safe. What it means is that there aren’t enough signals of safety - yet, and there’s a little more work to do to build this. ‘Safety’ isn’t about what is actually safe or not, it’s about what the brain perceives. Children might have the safest, warmest, most loving adult in front of them, but that doesn’t mean they’ll feel safe. This is when we have to look at how we might extend bigger cues of warmth, welcome, inclusiveness, and what we can do (or what roles or responsibilities can we give them) to help them feel valued and needed. This might take time, and that’s okay. Children aren’t meant to feel safe with every adult in front of them, so sometimes what they need most is our patience and understanding as we continue to build this. 

This is the way it works for all of us, everywhere. None of us will be able to give our best or do our best if we don’t feel welcome, liked, valued, and free from hostility, humiliation or judgement. 

This is especially important for our schools. A brain that doesn’t feel safe can’t learn. For schools to be places of learning, they first have to be places of relationship. Before we focus too sharply on learning support and behaviour management, we first have to focus on felt sense of safety support. The most powerful way to do this is through relationship. Teachers who do this are magic-makers. They show a phenomenal capacity to expand a child’s capacity to learn, calm big behaviour, and open up a child’s world. But relationships take time, and felt safety takes time. The time it takes for this to happen is all part of the process. It’s not a waste of time, it’s the most important use of it.♥️

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