Some years ago, at a workshop I ran for parents, one mum asked how they could stop her 3-year-old daughter from interfering with the early intervention (EI) specialist’s appointment with her son who was 5. He had autism and an intellectual disability and the service the family received was through a disability support service.
The EI worker would come into their home with a box of sensory resources for the little boy to engage in, with her guidance. The boy’s sibling was of course attracted to these new ‘toys’ that arrived each week and it was hard to remove her from the session. The mum had tried putting on a video for her to watch but wondered what else they might do to allow the EI worker and her son to have uninterrupted time together.
I had to be careful how I responded but tried to show what a benefit it might be to both children if the sibling was included in some, if not all, the activities. What 3-year-old wouldn’t want to be part of this? And what a wasted opportunity it was to not include her.
I see similar stories repeatedly. EI specialists or behaviour support practitioners who focus on the child with disability and their parent(s) only.
Who will likely have the longest relationship of all with the child, then adult, with disability over their lifetime? Not the professionals, nor parents. Siblings are the ones who are most likely to be there in later years.
However, the relationship might not come easily, especially if there are communication difficulties or behavioural issues. It may need support to become closer and stronger. And that must start early to ensure the best chance of the sibling relationship becoming strong and enduring.
As a parent, whenever you and your child with disability meet professionals, explore with them how they might include siblings.
Why is this important?
Two main reasons. First, your sibling child will feel more acknowledged and included. Adult siblings regularly say they felt ‘left out’ as children, not as important as the child with disability in their family and, as a result, their self-worth was affected. Being noticed and appreciated is crucial for children to develop mental wellbeing and coping skills they can call on throughout their lifetime.
Second, siblings can play a huge role in the learning and development of a child with a disability. In fact, the Autism CRC’s report Narrative review summary | Autism CRC showed that siblings could be important ‘agents’ in the development of their autistic brother or sister. They might assist with various learning tasks, with communication, or help them with social interaction with their own friends. Ultimately, it is about them sharing some activities and fun times together, to nurture the relationship and also assist with resilience building.
Such activities with therapists could also give siblings greater understanding of the disability and coping skills for when a brother or sister can’t communicate (‘he just ignores me’) or if a sibling experiences aggression from their brother or sister.
What might the inclusion of siblings look like?
- Talk to therapists or your disability support provider (behaviour support practitioner, developmental educator occupational therapist, psychologist, early intervention) about how siblings might be able to be included in activities for and with their brother or sister.
- Ask therapists to acknowledge siblings and seek their input. Depending on their age, they might have valuable insights.
- Ask therapists how they might nurture the relationship between siblings. Even if the disability has challenging behaviours there might be some activities that the siblings can share and have fun.
- If there is aggression and the sibling is at risk of harm, therapists might be able to help the sibling learn ways of either avoiding or defusing the situation but, if this is too difficult for a sibling, they will need support to keep themselves safe (e.g., their room or a neighbour’s house) and maintain their mental health and wellbeing.
There is much emphasis in the disability sector on children accessing the community and social inclusion but that must start in the child’s home. All relationships can be tricky but when a child has a disability there might be even more barriers in creating closeness and sharing. Early intervention and how much these relationships can be nurtured can have a very real influence on children’s futures – both the child with disability and their sibling(s).