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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Anxiety is a sign that the brain has registered threat and is mobilising the body to get to safety. One of the ways it does this is by organising the body for movement - to fight the danger or flee the danger. 

If there is no need or no opportunity for movement, that fight or flight fuel will still be looking for expression. This can come out as wriggly, fidgety, hyperactive behaviour. This is why any of us might pace or struggle to sit still when we’re anxious. 

If kids or teens are bouncing around, wriggling in their chairs, or having trouble sitting still, it could be anxiety. Remember with anxiety, it’s not about what is actually safe but about what the brain perceives. New or challenging work, doing something unfamiliar, too much going on, a tired or hungry body, anything that comes with any chance of judgement, failure, humiliation can all throw the brain into fight or flight.

When this happens, the body might feel busy, activated, restless. This in itself can drive even more anxiety in kids or teens. Any of us can struggle when we don’t feel comfortable in our own bodies. 

Anxiety is energy with nowhere to go. To move through anxiety, give the energy somewhere to go - a fast walk, a run, a whole-body shake, hula hooping, kicking a ball - any movement that spends the energy will help bring the brain and body back to calm.♥️
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#parenting #anxietyinkids #childanxiety #parenting #parent
This is not bad behaviour. It’s big behaviour a from a brain that has registered threat and is working hard to feel safe again. 

‘Threat’ isn’t about what is actually safe or not, but about what the brain perceives. The brain can perceive threat when there is any chance missing out on or messing up something important, anything that feels unfamiliar, hard, or challenging, feeling misunderstood, thinking you might be angry or disappointed with them, being separated from you, being hungry or tired, anything that pushes against their sensory needs - so many things. 

During anxiety, the amygdala in the brain is switched to high volume, so other big feelings will be too. This might look like tears, sadness, or anger. 

Big feelings have a good reason for being there. The amygdala has the very important job of keeping us safe, and it does this beautifully, but not always with grace. One of the ways the amygdala keeps us safe is by calling on big feelings to recruit social support. When big feelings happen, people notice. They might not always notice the way we want to be noticed, but we are noticed. This increases our chances of safety. 

Of course, kids and teens still need our guidance and leadership and the conversations that grow them, but not during the emotional storm. They just won’t hear you anyway because their brain is too busy trying to get back to safety. In that moment, they don’t want to be fixed or ‘grown’. They want to feel seen, safe and heard. 

During the storm, preserve your connection with them as much as you can. You might not always be able to do this, and that’s okay. None of this is about perfection. If you have a rupture, repair it as soon as you can. Then, when their brains and bodies come back to calm, this is the time for the conversations that will grow them. 

Rather than, ‘What consequences do they need to do better?’, shift to, ‘What support do they need to do better?’ The greatest support will come from you in a way they can receive: ‘What happened?’ ‘What can you do differently next time?’ ‘You’re the most wonderful kid and I know you didn’t want this to happen. How can you put things right? Do you need my help with that?’♥️
Big behaviour is a sign of a nervous system in distress. Before anything, that vulnerable nervous system needs to be brought back home to felt safety. 

This will happen most powerfully with relationship and connection. Breathe and be with. Let them know you get it. This can happen with words or nonverbals. It’s about feeling what they feel, but staying regulated.

If they want space, give them space but stay in emotional proximity, ‘Ok I’m just going to stay over here. I’m right here if you need.’

If they’re using spicy words to make sure there is no confusion about how they feel about you right now, flag the behaviour, then make your intent clear, ‘I know how upset you are and I want to understand more about what’s happening for you. I’m not going to do this while you’re speaking to me like this. You can still be mad, but you need to be respectful. I’m here for you.’

Think of how you would respond if a friend was telling you about something that upset her. You wouldn’t tell her to calm down, or try to fix her (she’s not broken), or talk to her about her behaviour. You would just be there. You would ‘drop an anchor’ and steady those rough seas around her until she feels okay enough again. Along the way you would be doing things that let her know your intent to support her. You’d do this with you facial expressions, your voice, your body, your posture. You’d feel her feels, and she’d feel you ‘getting her’. It’s about letting her know that you understand what she’s feeling, even if you don’t understand why (or agree with why). 

It’s the same for our children. As their important big people, they also need leadership. The time for this is after the storm has passed, when their brains and bodies feel safe and calm. Because of your relationship, connection and their felt sense of safety, you will have access to their ‘thinking brain’. This is the time for those meaningful conversations: 
- ‘What happened?’
- ‘What did I do that helped/ didn’t help?’
- ‘What can you do differently next time?’
- ‘You’re a great kid and I know you didn’t want this to happen, but here we are. What can you do to put things right? Do you need my help with that?’♥️
As children grow, and especially by adolescence, we have the illusion of control but whether or not we have any real influence will be up to them. The temptation to control our children will always come from a place of love. Fear will likely have a heavy hand in there too. When they fall, we’ll feel it. Sometimes it will feel like an ache in our core. Sometimes it will feel like failure or guilt, or anger. We might wish we could have stopped them, pushed a little harder, warned a little bigger, stood a little closer. We’re parents and we’re human and it’s what this parenting thing does. It makes fear and anxiety billow around us like lost smoke, too easily.

Remember, they want you to be proud of them, and they want to do the right thing. When they feel your curiosity over judgement, and the safety of you over shame, it will be easier for them to open up to you. Nobody will guide them better than you because nobody will care more about where they land. They know this, but the magic happens when they also know that you are safe and that you will hold them, their needs, their opinions and feelings with strong, gentle, loving hands, no matter what.♥️
Anger is the ‘fight’ part of the fight or flight response. It has important work to do. Anger never exists on its own. It exists to hold other more vulnerable emotions in a way that feels safer. It’s sometimes feels easier, safer, more acceptable, stronger to feel the ‘big’ that comes with anger, than the vulnerability that comes with anxiety, sadness, loneliness. This isn’t deliberate. It’s just another way our bodies and brains try to keep us safe. 

The problem isn’t the anger. The problem is the behaviour that can come with the anger. Let there be no limits on thoughts and feelings, only behaviour. When children are angry, as long as they are safe and others are safe, we don’t need to fix their anger. They aren’t broken. Instead, drop the anchor: as much as you can - and this won’t always be easy - be a calm, steadying, loving presence to help bring their nervous systems back home to calm. 

Then, when they are truly calm, and with love and leadership, have the conversations that will grow them - 
- What happened? 
- What can you do differently next time?
- You’re a really great kid. I know you didn’t want this to happen but here we are. How can you make things right. Would you like some ideas? Do you need some help with that?
- What did I do that helped? What did I do that didn’t help? Is there something that might feel more helpful next time?

When their behaviour falls short of ‘adorable’, rather than asking ‘What consequences they need to do better?’ let the question be, ‘What support do they need to do better.’ Often, the biggest support will be a conversation with you, and that will be enough.♥️
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#parenting #positiveparenting #mindfulparenting #anxietyinkids

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