Colman Noctor: What about the siblings of children with special needs?
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When a child has additional needs, parents understandably become consumed by trying to access or fight for services that will improve the child’s quality of life. Multiple trips to hospitals, doctors and other appointments are often par for the course but with so much emphasis on the child with needs, their siblings can be inadvertently impacted. While a brother or sister is being cared for or treated, siblings often feel left out and experience loneliness, anger, resentment and guilt.
When I broach this sensitive topic with parents, the typical initial response is to feel blamed or responsible. But my aim is to create an awareness of the possible impact on other siblings and offer parents some signposting as to what to be aware of when dealing with this complex family dynamic. This additional weight of responsibility may seem unfair because usually parents of a child with a disability are already dealing with overwhelming challenges. In my 25 years of working with families, I have recognised the dynamic of the ‘forgotten sibling’ many times. In most cases, parents have said they wished they had realised it earlier.
Parental availability is a currency that children use to measure their self-worth in families. Children exist in an ‘attention economy’ and can feel less loved if they receive less attention than other siblings. Though in most cases this is untrue, children do not have the cognitive ability to understand the context and associate the differential in attention with a differential in love.
From the point of diagnosis, siblings can experience feelings of isolation or abandonment. During the acute phases of the child's illness, parents frequently must spend long periods in hospital with their child. The practicalities necessitated by this include having siblings cared for by extended family or friends. This practice can evoke a sense of feeling unwanted or being a burden. This anxiety can be further compounded when parents eventually collect the siblings from the temporary carers - they are often exhausted, preoccupied and lack the energy to attend to their children's needs.
Parents sometimes keep siblings in the dark about their brother or sister’s illness and treatment. However, many siblings of a child with a disability have told me they sensed something was wrong and that the imagined scenario was more distressing than the actual situation.
Children can become hyper-receptive when anxious and develop emotional antennae that pick up on the slightest expressions of parental fear or anxiety - it's a survival mechanism. Children can also become clingier or demanding of parental attention when they perceive it to be short in supply. And they can feel more insecure, employing crass strategies to remind the parent of their presence and importance.
Siblings of children with disabilities frequently have trouble voicing their worries because they feel guilty. They are aware of how over-stretched their parents are and feel guilty they cannot be as understanding and accommodating as they feel they should be. Parents must allow a space for siblings to express their frustration and acknowledge how challenging the situation is for them.
It is also helpful if they have a relationship with someone - ideally outside of the immediate family - they trust and from whom they can receive objective reassurance about their worries. The more comfortable siblings are in expressing their thoughts or fears, the less likely they will internalise them and act them out in other ways. Formal networks of support can be helpful too, allowing them to discuss their fears safely.
Routines create an air of calmness within families. Clarity around hospital visiting times, child minding arrangements and other regular family activities will help introduce the concept of structure. Similarly, setting aside one-to-one time with siblings is essential as these children often miss spending time alone with each parent. Perhaps parents could take turns catering for the child in hospital or attending medical appointments, while the other gets to stay at home with the siblings. Maintaining some semblance of normality in household schedules and practices is of the utmost importance when attempting to alleviate anxiety and provide comfort and structure to siblings.
Parents must receive support from family and friends to sustain their energy to help their children and understand their emotional needs. Parents can communicate their support by being emotionally available to their children, offering encouragement and explaining what they should expect regarding their brother or sister’s care.
When families are taking care of a seriously ill child at home, managing the extent to which the siblings are involved in the child's care is essential. Rather than establish ground rules, allow them to become as involved as they want to be from a practical and emotional viewpoint. However, parents should be aware of the motivations for each sibling’s involvement. If guilt is a motivation, it can be problematic.
The currency of attention is measured by quantity and quality. Parents can offer quality attention by actively listening and acknowledging the feelings associated with the child’s personal experience. Respecting the siblings' rights, opinions and decisions and recognising and verbalising how difficult things are within the family will help them feel validated and heard.
The simple act of acknowledging the challenging experience (even if it can’t be changed) can be cathartic and paves the way for future conversations between parent and child.
A culture can develop in some families where the sibling believes they must create ‘needs’ to get parental attention. I've often seen parents just coming out of a situation with a child who has had a serious physical illness only to find themselves returning to treatment for another child who has developed a mental health problem.
Investing in the siblings of children with additional needs may seem like a big ask amid hectic schedules and medical appointments, but in my experience, it pays off. Many will say, ‘but he/ she seemed fine’, and they often do seem 'fine', but deeper exploration and providing them with the permission to struggle may reveal something else. It is far better to be aware of what is going on and be able to respond to your children than to find out after the fact.
Despite the challenges I have outlined, the families of children with additional needs are often some of the most resilient I have ever met. Even younger family members display an understanding of compassion well beyond their years and their patience and inner strength. When openness and togetherness are a feature of family life, they can overcome challenges that many of us could only imagine.
- Dr Colman Noctor is a child psychotherapist