Every great parent tries to make the holidays a special time for their kids. This can be more challenging to do in equal measure when one of them has disabilities.
In this week’s blog, our parent blogger Paige returns to explain some of the struggles she’s faced with watching her daughter in her role as sibling to a little brother with autism and epilepsy – in her words.
She tells us what’s helped her to cope, and why she encourages all families who access the NDIS to push for core funding, especially if their child has siblings who are struggling.
Paige has worked in the disability sector for 10 years, and in many different roles – from support worker to coordinator of a children’s respite program. Once her son was diagnosed with autism, she resigned from her position and put everything she had into finding him the best therapies and supports. She’s a fierce advocate, not just for her son, but for anyone living with disability.
I can’t speak personally about what it’s like to be a sibling to someone with a disability, however I can speak about what it’s like watching my daughter be an incredible older sibling to her little brother who has autism and epilepsy. It’s hard on her.
We see her struggle and we see the toll it takes on her own mental health. We see the worry in her eyes for her little brother. Our son has so many needs that mean that nearly every time, he comes first, and this isn’t how it should be. And let me tell you, it’s heart breaking to watch and be so torn between your children. I will scream the unfairness of it from the rooftops, but it is what is and there isn’t much we can do about it.
However, there is also something magical about siblings of children with disabilities. They truly are magical human beings. They learn so much from a young age that most kids don’t. They learn to love and embrace differences, and concepts like the importance of inclusion. They learn to be advocates and to stand up for what they believe in, and that kindness should rule the world. They feel a love like no other. The bond my two kids share, on the good days, is what gets us through.
Our daughter longs for hugs from her little brother, for him asking her to read him a story, and for him to come and sit next to her or check if she’s okay when she’s hurt. These are rare moments, but for her they’re huge and they remind her how much her brother does love her – even if it’s hard for him to show it.
As parents, we try our best, we speak of autism, we speak of neurodiversity in our home and we’re honest with our daughter about everything that happens here.
We don’t hide the truth, we don’t treat disability as a dirty word, and we embrace the good, the bad and the ugly that comes with our life. Splitting time evenly between my kids is probably the hardest part. The guilt that comes with not being able to do that is a trauma I will never fully heal from, but we try our best.
How core funding can help families to cope
I strongly encourage all families who access the NDIS to push for core funding, and to find a support worker who is right for them. This is especially the case if your child has siblings who are struggling. It gives you the flexibility to use NDIS funding to get support in areas that you need in your home, like a support worker who is there to look after your child while you take their siblings out and give them the quality time they need to ensure they know they’re appreciated. We have fought so hard for this and found someone who fits perfectly into our home.
The reason I’m telling you this is because having this support is one way that helps us to cope. We use this support to have special mummy, daddy and daughter time once a month. Our daughter looks forward to this special outing – she plans it all month and it reminds her how appreciated, loved and important she is to us.
I admit, finding a support worker who you feel comfortable having in your home can be a struggle – it really can – but trust your gut and please don’t give up, because the right person for your family is out there and once you find them, they’ll make life so much easier.
A lot of us know that going on outings with our children who are on the spectrum is a challenge – without support, their siblings end up needing to help just to try to make it successful. Unfortunately, in all honesty, I’ve found this takes away the fun for my daughter and turns it into a stressful situation for us all, because we’re all trying to keep her brother safe instead of having fun together.
Having that time to go out with our daughter ensures she can have time to be a child and enjoy quality time with mum and dad without any worries. We have had the most beautiful outings here in South Australia – some places we’ve been on our special dates are places we couldn’t go with her brother, like Uniqorn Eats, the cinemas, restaurants for her favourite meal, ice skating, The Beachouse – and next, she’s looking forward to going to Timezone.
How to ask for core funding in an NDIS plan
You can ask for core funding at planning meetings or reviews by being open and honest with the planner about your family situation. I have found being open and honest about our struggles has inevitably led to receiving more support within the new plan that’s being developed.
I know it can be hard – believe me, I’m in it with you, right here, right now – but it is possible to find ways to make it work, I promise you that.
Hi, I’m Paige from Adelaide, Australia. I am a mumma to two beautiful children, Lacey (NT) 6 and Oaklan (ASD L3 ) 3 and a wife to my husband, Sam. Together we enjoy going on adventures whether it be camping, trips to the zoo or soaking up the sun at the beach to name a few.
Oaklan was diagnosed in October 2020 with severe autism, and this inspired me to share our journey with the world. I want to spread knowledge and acceptance for those with special needs and advocate for a more inclusive world. Community inclusion is my passion and something I strive to teach people about within my community.