If you have other children, you may worry about how they are coping. You may feel that you don’t have the time you would like to spend with them and to support them in their daily activities.
Siblings of the child with medical needs often experience complex and fluctuating feelings and you are likely to notice this in their behaviour. They may feel sad that their sibling has medical problems; they may feel angry that the child with medical needs places constraints on the family.
Some children feel guilty that they can do things that their sibling cannot or jealous of the attention that the medically complex child receives. In moments of crisis such as when a child is hospitalized, siblings may be worried and afraid about what is happening with their sick brother or sister.
Parents may be away from the home more and this can be hard for the other children in the family to understand. Changes in their routines, less parent presence, and seeing their parents and other family members upset will have an impact on most children. Their sense of stability and confidence can be affected. In such situations, parents often find that healthy siblings seek more attention than usual, act out, withdraw, or regress in their behaviour.
Sometimes siblings act extra good, even when they are stressed inside. While you may not be able to take away the source of some of these emotions, there are strategies you can apply to keep you attuned to how they are doing and help them feel more secure and supported.
- Maintain usual family routines
- Find ways to create special routines
- Maintain developmentally appropriate expectations
- Prepare for sick days and hospitalizations
- Stay tuned to your child
- Seek support
Maintain usual family routines
Just as having a predictable routine can be a source of comfort and empowerment for you and your child with special needs, routines for siblings are an effective way to minimize stress. As you organize your daily routines, consider which activities should be prioritized for siblings (for example, attending a soccer game) versus which activities you might delegate to a family member, friend or a paid caregiver (for example, driving to school each day). Consider the value of the task, to your child and to yourself. Once you find a routine that works for your family, write it down and post it where all family members can look at it; a calendar style works well for many families. If you have younger children, use stickers or little drawings to indicate activities. Whatever the routine, find ways to acknowledge your child’s strengths and positive behaviours; techniques that are effective for your child with special needs will also be effective for healthy children. Show interest in your child’s daily activities and celebrate their accomplishments together – this can be as simple as hanging up their artwork on the refrigerator and words of praise. Praise, in particular, can be a powerful tool to acknowledge your child’s strengths and capabilities. Try to be specific when you praise your child (for example, “Your drawing is beautiful. I like the colours that you used!”). Be sure to regularly praise each child!
Find ways to create special routines
The reality of life with a special needs child is that other children in the family will have less of your attention and time. While you may not be able to change the quantity of time that you have with other members of your family (siblings and partners), you do have control over the quality of time that you spend. Find special routines, ideally small ones sprinkled through the week, that allow you to connect with your other children in a focused way. For example, sitting down together for an afterschool snack and to talk about some aspect of your child’s day. For children who are old enough, encourage their participation in small household tasks that you can do together, such as preparing food for a meal or cleaning up the kitchen. This increases your time together and to talk.
Consider planning special activities, based upon the interests of your child, that you can to do together. To help you find the time for activities like this, explore community and healthcare resources to see what options might be available for respite care for your special needs child. Special activities may be as simple as going to the park together to play or going for a walk. For children of all ages, it is the dedicated time together that helps them feel loved and valued.
Maintain developmentally appropriate expectations
As much as possible, maintain expectations of your other children that are appropriate for their age. While every child deserves individual and special attention, it is important to retain standards of their behaviour that is appropriate for their developmental level. Be sympathetic and responsive to each family member’s needs to their needs and guide each of your children in a positive way. Consistency and predictability are reassuring to children of all ages.
Prepare for sick days and hospitalizations
Again, the reality of parenting a child with medical complexity is that there will be both expected and unexpected times when you are less available to your other children – the rollercoaster ride. If possible develop a network of family and friends who can step in to help at times like this. Try to maintain the key elements of your routine and contact with your other children. Find ways to show them that they are special to you and that you are thinking of them. For example:
Touch base with them at key points during the day. For example, Facetime before daycare or school, talk to them when they return home at the end of the day for an update on their day or just to say “hi”, and arrange a bedtime story using Facetime or Skype. It will be reassuring for your child to see your face, hear your voice and engage in an aspect of familiar routine with you.
Try to arrange to see your other children as often as possible, even if it means someone bringing them to you so that you can eat a meal together, sit down and look at their school work or engage in a fun activity.
If at all possible, arrange for them to sleep in their own home during your absence.
Encourage them to make something for the hospitalized child, such as a picture that you can put up at the bed or on the wall.
Accept help. Arrange in advance for a trusted friend or family member to step in and ensure that your other children get to their activities, that meals are prepared etc.
Think of small treats for your children, depending on their interests eg, stickers, a toy or a book
Keep them up to date regarding the medical situation of the hospitalized child. Explain in a simple way that is appropriate to their age. Be honest about the status of the medically complex child. Reassure your children that their sibling is being well looked after by medical staff and that you are alright.
If it is possible for your other children to visit the hospitalized child, this can be reassuring to them. This will often require careful preparation so that they know ahead of time what the hospital context is like and how their medically complex sibling will look. Members of the healthcare team are available to guide you. In general, aim for short and structured visits.
Stay tuned to your child
Just as it is important to stay tuned to your child with medical complexity, paying attention, listening and spending time with your healthy children are important. Optimize the quality of your time together by having fun and doing activities that encourage communication. Take photographs to record these times together. These experiences create strong family memories.
Talk to them about how they are doing and what they are feeling. Keep the door open to conversation. In younger children, watch their play patterns. Be sure to address any fears, to answer their questions honestly, in a way that is appropriate for their level of development and to optimize their understanding. Be sure to address any misconceptions they have. Children may feel responsible for the health issues of the medically complex child, worry that they too may be affected by the same issues. If you are not sure how to answer your child’s questions, be sure to discuss this with the healthcare team.
Allow your other children to participate in the care of the medically complex child where appropriate, but do not insist on this help (for example combing his/her hair, helping with physiotherapy exercises).
Pay attention to each child’s behaviour. Be attentive to problems or changes in their sleep patterns, mood, appetite, interactions with friends, interest in activities. Communicate as closely as possible with educators and other caregivers so that you are aware of any concerns that may be apparent at daycare or school. Address issues as promptly as possible. We encourage you to discuss any concerns with your healthcare team.
Even with the best of intentions, it is challenging to be the healthy sibling of a child with special medical needs. The conflicting emotions may be difficult to navigate for even the most independent and mature child. Ask the healthcare team if there are resources available to support siblings, such as a support group or consultation with a child psychologist, child life worker or a social worker. Seek the advice of the healthcare team to find the solutions that fit your family best.