So often people comment on how wonderful my eldest daughter is with her sister who has Cerebral Palsy and autism. Constant praise on how patient, understanding and caring she is. They are right, she is one of her biggest supporters and advocators. Partly due to her kind and empathetic nature but also because, like other siblings she has grown up with a slightly different sibling experience. One that has given her a speed session on inclusion and diversity.
By no means is she expected to do half of the things that she does, she just naturally does, and I can tell it gives her a sense of pride and fulfilment being her sisters safe place.
But I am cautious on how much she takes on and the effect and toll that this can have on her little mind. It’s when her sister started school with her that I really noticed that she began to feel a sense of worry and pressure. The first year was a bit of a rough start and with me not being there she felt that the role of helping, comforting and concern fell on her. I could see that the burden of seeing her sister struggling with school was upsetting her, this is when I really tried to step in and remind her that I was the parent, and I was there to make sure Willow was ok. The school ensured that she took a step back and we worked together to pull back some of that reliance her sister had on her.
Another aspect that the schooling journey has brought is some pretty intense burnout and emotional dysregulation from her sister. Having autism and cerebral palsy meant that she is constantly exhausted mentally, physically, and emotionally after school, therefore some quite extreme behaviours at home.Sibling rivalry can be intense for any sibling combo during the best of times, so with disabilities thrown into the mix it can bring up a whirlwind of feelings.Sometimes I can tell it overwhelms and frustrates her while playing quietly on her mind, other times it infuriates her, and she will have angry outbursts about her sister’s behaviour. Which is fair enough…its hard and she is allowed to vent.
Then there is the distant jealously that her sister gets ‘special treatment’ and gets away with things. She isn’t wrong though!Parenting a child who is neurodiverse compared to their neurotypical sibling is different. As much as you try to make things fair, sometimes it just isn’t possible. We do let things slide for her sister a little more sometimes, partly because she can’t comprehend things like her elder sister and to be honest, partly because as parents sometimes you’re just feeling a bit defeated and it’s just not worth the hassle and burnout. You need to pick your battles.
So, how do you manage the relationship and dynamics of a sibling to a child with a disability? How do you cope with the parent guilt? And how do you ensure that they feel equally as loved and cared for?
While I don’t have all the answers, here are some ideas and suggestions that I know have helped our family.
We have always been open and honest with our girls from day one. We talk about cerebral palsy and autism. We chat about the amazing milestones and we speak about the struggles that come along with it. Not only does this help our disabled daughter understand but it helps her sisters to make sense of it all too.
Something that I always try to ensure is that my eldest knows that she has a safe space to chat and vent if needed. I want her to know that nothing is off limits to discuss, sometimes I discuss the times that I struggle with it all. This emphasises to her that thats its ok to love someone and find them hard to manage sometimes too. I want her to know this is the case for her too and that all her feelings are ok. I hope this feeling of validation will ensure she doesn’t think she needs to hide anything.
It’s inevitable that a lot of time goes into therapy and appointments not to mention just day to day life when you have a child with a disability. So, it’s not surprising that a lot of siblings can feel left out.Even if they are old enough to understand the complexities that come with a disability, there are always going to be times where they wished they had the same amount of attention.
To help ease these feeling my husband and I always try to make sure that our girls feel like they all get quality time together. It doesn’t have to be just one on one ‘special’ dates where you treat them to a day out. All the little moments collectively add up and are just as special, perhaps even more so. For example, I let my eldest daughter stay up some times and we play with each other’s hair and chat or watch a show together. Other times its simply having her come to the shop with me and getting an ice-cream at the beach on the way home. Just little special one on one moments which I know have a big impact on her mental health and wellbeing.
Celebrate their strengths and interests
If you have a child with a disability, you’re probably no stranger to the concept of ‘inch stones’. Those tiny little milestones that are celebrated throughout the journey. My daughter’s right hand is severely affected by her cerebral palsy and when she was younger, she had no idea it was even there. After years and years of therapy interventions she has grown to have some form of awareness and can even use it to a degree. Over the years there have been hundreds of little inch stone moments; when she first moved it intentionally, noticed it, touched something with it, high fived, painted with it, moved something…..and so on.
Her sisters don’t get these constant mini celebrations as all the things she works so hard to do just come naturally to them.
I am super mindful of this so try to ensure that their strengths are spoken about, encouraged, and celebrated and that their interests are supported and noticed. For example, my eldest daughter loves gymnastics so we make it a point to watch her and have the family watch and support her just as we do for her sisters therapy appointments.
There are a variety of great books and services out there specifically designed to cater to siblings to ensure they feel accepted and included. Sometimes siblings may open up more to someone else, or gain perspective and insight from a book.
'Dear Jack' written by Julie Leavit wolfe
'My brother Charlie' written by Holly Robinson Pete
'Billys sister, life when your sibling has a disability' written by Jessica Leving
'My busy brain' written by Pat Thomas
'Views from our shoes' written by Donald Meyer
'Sibling love' written by Sharifa Anozie
'Just because' written by Rebecca Elliott
'We'll paint the octopus red' written by Stephanie Stuve-Boden
'The invisible string' written by Patrice Karst
The young carers network
The holiday zone (TAS)
Little Dreamers (NSW, VIC, QLD)
Camp Sababa - SIBS
Irabina autism services - Archies club (VIC)
Livewire - online