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. 

Leave a Reply

Your email address will not be published. Required fields are marked *

Follow Hey Sigmund on Instagram

When things feel hard or the world feels big, children will be looking to their important adults for signs of safety. They will be asking, ‘Do you think I'm safe?' 'Do you think I can do this?' With everything in us, we have to send the message, ‘Yes! Yes love, this is hard and you are safe. You can do hard things.'

Even if we believe they are up to the challenge, it can be difficult to communicate this with absolute confidence. We love them, and when they're distressed, we're going to feel it. Inadvertently, we can align with their fear and send signals of danger, especially through nonverbals. 

What they need is for us to align with their 'brave' - that part of them that wants to do hard things and has the courage to do them. It might be small but it will be there. Like a muscle, courage strengthens with use - little by little, but the potential is always there.

First, let them feel you inside their world, not outside of it. This lets their anxious brain know that support is here - that you see what they see and you get it. This happens through validation. It doesn't mean you agree. It means that you see what they see, and feel what they feel. Meet the intensity of their emotion, so they can feel you with them. It can come off as insincere if your nonverbals are overly calm in the face of their distress. (Think a zen-like low, monotone voice and neutral face - both can be read as threat by an anxious brain). Try:

'This is big for you isn't it!' 
'It's awful having to do things you haven't done before. What you are feeling makes so much sense. I'd feel the same!

Once they really feel you there with them, then they can trust what comes next, which is your felt belief that they will be safe, and that they can do hard things. 

Even if things don't go to plan, you know they will cope. This can be hard, especially because it is so easy to 'catch' their anxiety. When it feels like anxiety is drawing you both in, take a moment, breathe, and ask, 'Do I believe in them, or their anxiety?' Let your answer guide you, because you know your young one was built for big, beautiful things. It's in them. Anxiety is part of their move towards brave, not the end of it.
Sometimes we all just need space to talk to someone who will listen without giving advice, or problem solving, or lecturing. Someone who will let us talk, and who can handle our experiences and words and feelings without having to smooth out the wrinkles or tidy the frayed edges. 

Our kids need this too, but as their important adults, it can be hard to hush without needing to fix things, or gather up their experience and bundle it into a learning that will grow them. We do this because we love them, but it can also mean that they choose not to let us in for the wrong reasons. 

We can’t help them if we don’t know what’s happening in their world, and entry will be on their terms - even more as they get older. As they grow, they won’t trust us with the big things if we don’t give them the opportunity to learn that we can handle the little things (which might feel seismic to them). They won’t let us in to their world unless we make it safe for them to.

When my own kids were small, we had a rule that when I picked them up from school they could tell me anything, and when we drove into the driveway, the conversation would be finished if they wanted it to be. They only put this rule into play a few times, but it was enough for them to learn that it was safe to talk about anything, and for me to hear what was happening in that part of their world that happened without me. My gosh though, there were times that the end of the conversation would be jarring and breathtaking and so unfinished for me, but every time they would come back when they were ready and we would finish the chat. As it turned out, I had to trust them as much as I wanted them to trust me. But that’s how parenting is really isn’t it.

Of course there will always be lessons in their experiences we will want to hear straight up, but we also need them to learn that we are safe to come to.  We need them to know that there isn’t anything about them or their life we can’t handle, and when the world feels hard or uncertain, it’s safe here. By building safety, we build our connection and influence. It’s just how it seems to work.♥️
.
#parenting #parenthood #mindfulparenting
Words can be hard sometimes. The right words can be orbital and unconquerable and hard to grab hold of. Feelings though - they’ll always make themselves known, with or without the ‘why’. 

Kids and teens are no different to the rest of us. Their feelings can feel bigger than words - unfathomable and messy and too much to be lassoed into language. If we tap into our own experience, we can sometimes (not all the time) get an idea of what they might need. 

It’s completely understandable that new things or hard things (such as going back to school) might drive thoughts of falls and fails and missteps. When this happens, it’s not so much the hard thing or the new thing that drives avoidance, but thoughts of failing or not being good enough. The more meaningful the ‘thing’ is, the more this is likely to happen. If you can look behind the words, and through to the intention - to avoid failure more than the new or difficult experience, it can be easier to give them what they need. 

Often, ‘I can’t’ means, ‘What if I can’t?’ or, ‘Do you think I can?’, or, ‘Will you still think I’m brave, strong, and capable of I fail?’ They need to know that the outcome won’t make any difference at all to how much you adore them, and how capable and exceptional you think they are. By focusing on process, (the courage to give it a go), we clear the runway so they can feel safer to crawl, then walk, then run, then fly. 

It takes time to reach full flight in anything, but in the meantime the stumbling can make even the strongest of hearts feel vulnerable. The more we focus on process over outcome (their courage to try over the result), and who they are over what they do (their courage, tenacity, curiosity over the outcome), the safer they will feel to try new things or hard things. We know they can do hard things, and the beauty and expansion comes first in the willingness to try. 
.
#parenting #mindfulparenting #positiveparenting #mindfulparent
Never in the history of forever has there been such a  lavish opportunity for a year to be better than the last. Not to be grabby, but you know what I’d love this year? Less opportunities that come in the name of ‘resilience’. I’m ready for joy, or adventure, or connection, or gratitude, or courage - anything else but resilience really. Opportunities for resilience have a place, but 2020 has been relentless with its servings, and it’s time for an out breath. Here’s hoping 2021 will be a year that wraps its loving arms around us. I’m ready for that. x
The holidays are a wonderland of everything that can lead to hyped up, exhausted, cranky, excited, happy kids (and adults). Sometimes they’ll cycle through all of these within ten minutes. Sugar will constantly pry their little mouths wide open and jump inside, routines will laugh at you from a distance, there will be gatherings and parties, and everything will feel a little bit different to usual. And a bit like magic. 

Know that whatever happens, it’s all part of what the holidays are meant to look like. They aren’t meant to be pristine and orderly and exactly as planned. They were never meant to be that. Christmas is about people, your favourite ones, not tasks. If focusing on the people means some of the tasks fall down, let that be okay, because that’s what Christmas is. It’s about you and your people. It’s not about proving your parenting stamina, or that you’ve raised perfectly well-behaved humans, or that your family can polish up like the catalog ones any day of the week, or that you can create restaurant quality meals and decorate the table like you were born doing it. Christmas is messy and ridiculous and exhausting and there will be plenty of frayed edges. And plenty of magic. The magic will happen the way it always happens. Not with the decorations or the trimmings or the food or the polish, but by being with the ones you love, and the ones who love you right back.

When it all starts to feel too important, too necessary and too ‘un-let-go-able’, be guided by the bigger truth, which is that more than anything, you will all remember how you all felt – as in how happy they felt, how loved they felt were, how noticed they felt. They won’t care about the instagram-worthy meals on the table, the cleanliness of the floors, how many relatives they visited, or how impressed other grown-ups were with their clean faces and darling smiles. It’s easy to forget sometimes, that what matters most at Christmas isn’t the tasks, but the people – the ones who would give up pretty much anything just to have the day with you.

Pin It on Pinterest