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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I’m so excited for this! I’m coming back to Perth in February for another parent talk on 'Strengthening Children and Teens Against Anxiety'. Here’s the when and the where:

⏰ 6:30-8:30pm | 📆 Wed 22 Feb 2023
📍 Peter Moyes Anglican Community School, #mindarie

For tickets or more info google:

Parenting Connection WA Karen Young anxiety Mindarie Perth

💜 Thanks to @ngalaraisinghappiness for hosting this event.

#supportingwaparents #parentingwa
Let them know …

Anxiety shows up to check that you’re okay, not to tell you that you’re not. It’s your brain’s way of saying, ‘Not sure - there might be some trouble here, but there might not be, but just in case you should be ready for it if it comes, which it might not – but just in case you’d better be ready to run or fight – but it might be totally fine.’ Brains can be so confusing sometimes! 

You have a brain that is strong, healthy and hardworking. It’s magnificent and it’s doing a brilliant job of doing exactly what brains are meant to do – keep you alive. 

Your brain is fabulous, but it needs you to be the boss. Here’s how. When you feel anxious, ask yourself two questions:

- ‘Do I feel like this because I’m in danger or because there’s something brave or important I need to do?’

- Then, ‘Is this a time for me to be safe (sometimes it might be) or is this a time for me to be brave?

And remember, you will always have ‘brave’ in you, and anxiety doesn’t change that a bit.♥️

#positiveparenting #mindfulparenting #parenting #childanxiety #heywarrior #heywarriorbook
The temptation to fix their big feelings can be seismic. Often this is connected to needing to ease our own discomfort at their discomfort, which is so very normal.

Big feelings in them are meant to raise (sometimes big) feelings in us. This is all a healthy part of the attachment system. It happens to mobilise us to respond to their distress, or to protect them if their distress is in response to danger.

Emotion is energy in motion. We don’t want to bury it, stop it, smother it, and we don’t need to fix it. What we need to do is make a safe passage for it to move through them. 

Think of emotion like a river. Our job is to hold the ground strong and steady at the banks so the river can move safely, without bursting the banks.

However hard that river is racing, they need to know we can be with the river (the emotion), be with them, and handle it. This might feel or look like you aren’t doing anything, but actually it’s everything.

The safety that comes from you being the strong, steady presence that can lovingly contain their big feelings will let the emotional energy move through them and bring the brain back to calm.

Eventually, when they have lots of experience of us doing this with them, they will learn to do it for themselves, but that will take time and experience. The experience happens every time you hold them steady through their feelings. 

This doesn’t mean ignoring big behaviour. For them, this can feel too much like bursting through the banks, which won’t feel safe. Sometimes you might need to recall the boundary and let them know where the edges are, while at the same time letting them see that you can handle the big of the feeling. Its about loving and leading all at once. ‘It’s okay to be angry. It’s not okay to use those words at me.’

Ultimately, big feelings are a call for support. Sometimes support looks like breathing and being with. Sometimes it looks like showing them you can hold the boundary, even when they feel like they’re about to burst through it. And if they’re using spicy words to get us to back off, it might look like respecting their need for space but staying in reaching distance, ‘Ok, I’m right here whenever you need.’♥️
We all need certain things to feel safe enough to put ourselves into the world. Kids with anxiety have magic in them, every one of them, but until they have a felt sense of safety, it will often stay hidden.

‘Safety’ isn’t about what is actually safe or not, but about what they feel. At school, they might have the safest, most loving teacher in the safest, most loving school. This doesn’t mean they will feel enough relational safety straight away that will make it easier for them to do hard things. They can still do those hard things, but those things are going to feel bigger for a while. This is where they’ll need us and their other anchor adult to be patient, gentle, and persistent.

Children aren’t meant to feel safe with and take the lead from every adult. It’s not the adult’s role that makes the difference, but their relationship with the child.

Children are no different to us. Just because an adult tells them they’ll be okay, it doesn’t mean they’ll feel it or believe it. What they need is to be given time to actually experience the person as being safe, supportive and ready to catch them.

Relationship is key. The need for safety through relationship isn’t an ‘anxiety thing’. It’s a ‘human thing’. When we feel closer to the people around us, we can rise above the mountains in our way. When we feel someone really caring about us, we’re more likely to open up to their influence
and learn from them.

But we have to be patient. Even for teachers with big hearts and who undertand the importance of attachment relationships, it can take time.

Any adult at school can play an important part in helping a child feel safe – as long as that adult is loving, warm, and willing to do the work to connect with that child. It might be the librarian, the counsellor, the office person, a teacher aide. It doesn’t matter who, as long as it is someone who can be available for that child at dropoff or when feelings get big during the day and do little check-ins along the way.

A teacher, or any important adult can make a lasting difference by asking, ‘How do I build my relationship with this child so s/he trusts me when I say, ‘I’ve got you, and I know you can do this.’♥️

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