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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‘Brave’ doesn’t always feel like certain, or strong, or ready. In fact, it rarely does. That what makes it brave.♥️
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#parenting #mindfulparenting #parentingtips
We teach our kids to respect adults and other children, and they should – respect is an important part of growing up to be a pretty great human. There’s something else though that’s even more important – teaching them to respect themselves first. 

We can’t stop difficult people coming into their lives. They might be teachers, coaches, peers, and eventually, colleagues, or perhaps people connected to the people who love them. What we can do though is give our kids independence of mind and permission to recognise that person and their behaviour as unacceptable to them. We can teach our kids that being kind and respectful doesn’t necessarily mean accepting someone’s behaviour, beliefs or influence. 

The kindness and respect we teach our children to show to others should never be used against them by those broken others who might do harm. We have to recognise as adults that the words and attitudes directed to our children can be just as damaging as anything physical. 

If the behaviour is from an adult, it’s up to us to guard our child’s safe space in the world even harder. That might be by withdrawing support for the adult, using our own voice with the adult to elevate our child’s, asking our child what they need and how we can help, helping them find their voice, withdrawing them from the environment. 

Of course there will be times our children do or say things that aren’t okay, but this never makes it okay for any adult in your child’s life to treat them in a way that leads them to feeling ‘less than’.

Sometimes the difficult person will be a peer. There is no ‘one certain way’ to deal with this. Sometimes it will involve mediation, role playing responses, clarifying the other child’s behaviour, asking for support from other adults in the environment, or letting go of the friendship.

Learning that it’s okay to let go of relationships is such an important part of full living. Too often we hold on to people who don’t deserve us. Not everyone who comes into our lives is meant to stay and if we can help our children start to think about this when they’re young, they’ll be so much more empowered and deliberate in their relationships when they’re older.♥️
When we are angry, there will always be another emotion underneath it. It is this way for all of us. 

Anger itself is a valid emotion so it’s important not to dismiss it. Emotion is e-motion - energy in motion. It has to find a way out, which is why telling an angry child to calm down or to keep their bodies still will only make things worse for them. They might comply, but their bodies will still be in a state of distress. 

Often, beneath an angry child is an anxious one needing our help. It’s the ‘fight’ part of the fight or flight response. As with all emotions, anger has a job to do - to help us to safety through movement, or to recruit support, or to give us the physical resources to meet a need or to change something that needs changing. It doesn’t mean it does the job well, because an angry brain means the feeling brain has the baton, while the thinking brain sits out for a while. What it means is that there is a valid need there and this young person is doing their very best to meet it, given their available resources in the moment or their developmental stage. 

Children need the same thing we all need when we’re feeling fierce - to be seen,  heard, and supported; to find a way to get the energy out, either with words or movement. Not to be shut down or ‘fixed’. 

Our job isn’t to stop their anger, but to help them find ways to feel it and express it in ways that don’t do damage. This will take lots of experience, and lots of time - and that’s okay.♥️
The SCCR Online Conference 2021 is a wonderful initiative by @sccrcentre (Scottish Centre for Conflict Resolution) which will explore ’The Power of Reconnection’. I’ve been working with SCCR for many years. They do incredible work to build relationships between young people and the important adults around them, and I’m excited to be working with them again as part of this conference.

More than ever, relationships matter. They heal, provide a buffer against stress, and make the world feel a little softer and safer for our young people. Building meaningful connections can take time, and even the strongest relationships can feel the effects of disconnection from time to time. As part of this free webinar, I’ll be talking about the power of attachment relationships, and ways to build relationships with the children and teens in your life that protect, strengthen, and heal. 

The workshop will be on Monday 11 October at 7pm Brisbane, Australia time (10am Scotland time). The link to register is in my story.
There are many things that can send a nervous system into distress. These can include physiological (tired, hungry, unwell), sensory overload/ underload, real or perceived threat (anxiety), stressed resources (having to share, pay attention, learn new things, putting a lid on what they really think or want - the things that can send any of us to the end of ourselves).

Most of the time it’s developmental - the grown up brain is being built and still has a way to go. Like all beautiful, strong, important things, brains take time to build. The part of the brain that has a heavy hand in regulation launches into its big developmental window when kids are about 6 years old. It won’t be fully done developing until mid-late 20s. This is a great thing - it means we have a wide window of influence, and there is no hurry.

Like any building work, on the way to completion things will get messy sometimes - and that’s okay. It’s not a reflection of your young one and it’s not a reflection of your parenting. It’s a reflection of a brain in the midst of a build. It’s wondrous and fascinating and frustrating and maddening - it’s all the things.

The messy times are part of their development, not glitches in it. They are how it’s meant to be. They are important opportunities for us to influence their growth. It’s just how it happens. We have to be careful not to judge our children or ourselves because of these messy times, or let the judgement of others fill the space where love, curiosity, and gentle guidance should be. For sure, some days this will be easy, and some days it will feel harder - like splitting an atom with an axe kind of hard.

Their growth will always be best nurtured in the calm, loving space beside us. It won’t happen through punishment, ever. Consequences have a place if they make sense and are delivered in a way that doesn’t shame or separate them from us, either physically or emotionally. The best ‘consequence’ is the conversation with you in a space that is held by your warm loving strong presence, in a way that makes it safe for both of you to be curious, explore options, and understand what happened.♥️
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#mindfulparenting #positiveparenting #parenting

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