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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The need to feel connected to, and seen by our people is instinctive. 

THE FIX: Add in micro-connections to let them feel you seeing them, loving them, connecting with them, enjoying them:

‘I love being your mum.’
‘I love being your dad.’
‘I missed you today.’
‘I can’t wait to hang out with you at bedtime 
and read a story together.’

Or smiling at them, playing with them, 
sharing something funny, noticing something about them, ‘remembering when...’ with them.

And our adult loves need the same, as we need the same from them.♥️
Our kids need the same thing we do: to feel safe and loved through all feelings not just the convenient ones.

Gosh it’s hard though. I’ve never lost my (thinking) mind as much at anyone as I have with the people I love most in this world.

We’re human, not bricks, and even though we’re parents we still feel it big sometimes. Sometimes these feelings make it hard for us to be the people we want to be for our loves.

That’s the truth of it, and that’s the duality of being a parent. We love and we fury. We want to connect and we want to pull away. We hold it all together and sometimes we can’t.

None of this is about perfection. It’s about being human, and the best humans feel, argue, fight, reconnect, own our ‘stuff’. We keep working on growing and being more of our everythingness, just in kinder ways.

If we get it wrong, which we will, that’s okay. What’s important is the repair - as soon as we can and not selling it as their fault. Our reaction is our responsibility, not theirs. This might sound like, ‘I’m really sorry I yelled. You didn’t deserve that. I really want to hear what you have to say. Can we try again?’

Of course, none of this means ‘no boundaries’. What it means is adding warmth to the boundary. One without the other will feel unsafe - for them, us, and others.

This means making sure that we’ve claimed responsibility- the ability to respond to what’s happening. It doesn’t mean blame. It means recognising that when a young person is feeling big, they don’t have the resources to lead out of the turmoil, so we have to lead them out - not push them out.

Rather than focusing on what we want them to do, shift the focus to what we can do to bring felt safety and calm back into the space.

THEN when they’re calm talk about what’s happened, the repair, and what to do next time.

Discipline means ‘to teach’, not to punish. They will learn best when they are connected to you. Maybe there is a need for consequences, but these must be about repair and restoration. Punishment is pointless, harmful, and outdated.

Hold the boundary, add warmth. Don’t ask them to do WHEN they can’t do. Wait until they can hear you and work on what’s needed. There’s no hurry.♥️
Recently I chatted with @rebeccasparrow72 , host of ABC Listen’s brilliant podcast, ‘Parental as Anything: Teens’. I loved this chat. Bec asked all the questions that let us crack the topic right open. Our conversation was in response to a listener’s question, that I expect will be familiar to many parents in many homes. Have a listen here:
https://www.abc.net.au/listen/programs/parental-as-anything-with-maggie-dent/how-can-i-help-my-anxious-teen/104035562
School refusal is escalating. Something that’s troubling me is the use of the word ‘school can’t’ when talking about kids.

Stay with me.

First, let’s be clear: school refusal isn’t about won’t. It’s about can’t. Not truly can’t but felt can’t. It’s about anxiety making school feel so unsafe for a child, avoidance feels like the only option.

Here’s the problem. Language is powerful, and when we put ‘can’t’ onto a child, it tells a deficiency story about the child.

But school refusal isn’t about the child.
It’s about the environment not feeling safe enough right now, or separation from a parent not feeling safe enough right now. The ‘can’t’ isn’t about the child. It’s about an environment that can’t support the need for felt safety - yet.

This can happen in even the most loving, supportive schools. All schools are full of anxiety triggers. They need to be because anything new, hard, brave, growthful will always come with potential threats - maybe failure, judgement, shame. Even if these are so unlikely, the brain won’t care. All it will read is ‘danger’.

Of course sometimes school actually isn’t safe. Maybe peer relationships are tricky. Maybe teachers are shouty and still using outdated ways to manage behaviour. Maybe sensory needs aren’t met.

Most of the time though it’s not actual threat but ’felt threat’.

The deficiency isn’t with the child. It’s with the environment. The question isn’t how do we get rid of their anxiety. It’s how do we make the environment feel safe enough so they can feel supported enough to handle the discomfort of their anxiety.

We can throw all the resources we want at the child, but:

- if the parent doesn’t believe the child is safe enough, cared for enough, capable enough; or

- if school can’t provide enough felt safety for the child (sensory accommodations, safe peer relationships, at least one predictable adult the child feels safe with and cared for by),

that child will not feel safe enough.

To help kids feel safe and happy at school, we have to recognise that it’s the environment that needs changing, not the child. This doesn’t mean the environment is wrong. It’s about making it feel more right for this child.♥️
Such a beautiful 60 second wrap of my night with parents and carers in Hastings, New Zealand talking about building courage and resilience in young people. Because that’s how courage happens - it builds, little bit by little bit, and never feeling like ‘brave’ but as anxiety. Thank you @healhealthandwellbeing for bringing us together happen.♥️

…

Original post by @healhealthandwellbeing:
🌟 Thank You for Your Support! 🌟

A huge thank you to everyone who joined us for the "Building Courage and Resilience" talk with the amazing  Karen Young - Hey Sigmund. Your support for Heal, our new charity focused on community health and wellbeing, means the world to us!

It was incredible to see so many of you come together while at the same time being able to support this cause and help us build a stronger, more resilient community.

A special shoutout to Anna Catley from Anna Cudby Videography for creating some fantastic footage Your work has captured the essence of this event perfectly ! To the team Toitoi - Hawke's Bay Arts & Events Centre thank you for always making things so easy ❤️ 

Follow @healhealthandwellbeing for updates and news of events. Much more to come!
 

#Heal #CommunityHealth #CourageAndResilience #KarenYoung #ThankYou

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