If your family is at all like ours, you were completely unprepared to discover that your child has a chronic illness. It’s certainly not something most families plan for. There are a lot of things we do plan for, but I’m certain this is not one of them.
While most of my material up to his point has focused on Emily, epilepsy or the ketogenic diet, I haven’t spoken much about our “other child in the room”. This is a phrase I have heard a lot and I felt it was time to share some of the ideas our family implemented to help our other child in the room.
Children are Resilient
If we’ve learned but one thing in our journey, it’s that both our children are strong and resilient. Riley, who is two and a half years older than Emily has shown a strong sense of love, admiration, patience and understanding towards Emily and her needs. I feel this is because, right from the start we treated Emily’s epilepsy as a family affair.. Riley joined us at doctor appointments and hospital visits where the medical staff took the time to make sure things were explained to him using age appropriate language.
We didn’t feel that keeping Riley in the dark about what was happening with Emily was the right approach despite some people thinking it might be too much for him and that he should be left to be a kid. Like us, Riley had some serious concerns and worries of his own; things his dad and I could never fathom since we are no longer looking at the world through the eyes of a then 8 year old. Having Riley join us helped in a number of ways:
• he realized quickly that he wasn’t going to “catch” epilepsy from Emily
• he also realized that getting to miss school to sit at the hospital for the day is really not all that fun
• he learned appropriate language he could use when speaking with other children about Emily’s epilepsy
• he saw with his own eyes how brave his little sister is since she can get poked with a needle and not even cry, a fact he remains very proud of
• most importantly, he got to see first hand that Emily was being well taken care of and would be “ok”!!
We often get so caught up worrying about the “sick” kid that we forget that our other children are affected by a family illness also. It’s important that we take the time to remind our other children how much they are loved and plan for some special one-on-one time that makes them feel special. While they don’t want to be the one who is sick, it’s natural for them to feel a little left out or unimportant; after all, all this fuss and attention is being made of their sibling and it can feel like they are being ignored.
It’s also important that they get the chance to talk about how they are feeling. Our neurologist recommended that Emily see a psychologist. We decided to bring Riley along as well. This turned out to be a great opportunity for him to speak about some concerns he was having and find his voice to tell me “mom, when we go back to school, can you tell Emily’s friends to get a teacher at recess if she has a seizure, I just wanna go outside at recess and have some fun.” What Riley had failed to tell us, was that for the last few months of Emily’s grade one year, her friends would constantly seek him out to “help” Emily if they saw her have a seizure on the playground. Being the loving and responsible brother he was, he was always at her side to be sure she was ok, but it was really stressing him out!
It’s important that while you’re busy paying close attention to the daily behaviors and changes you are asked to track for your sick child, that you also be aware of small changes that might be going on for the other child(ren). Speak to your child’s teachers and care takers and ask them to be alert for any small and subtle changes in behavior, appetite or social interactions. Often, there are many small signs that go unnoticed before something big is staring you in the eye and you’ve lost a chance to intervene at an early stage. Working as a team and knowing from the start that the illness of one child will affect the entire family unit are keys to success.
While there are many ways to involve the other child in the room, some simple tips would include:
• talk as a family about what’s happening for your “sick” child
• make some time for the “other” child to feel special and the center of attention from time to time
• don’t allow the “sick” child to blame bad behavior on their sickness
• make sure that teachers, sports coaches, extended family, child care providers and anyone who spends time with your children know what’s going on and are directed to speak with you about any subtle changes they may witness
• talk to your medical team about the right language to use or possibly the opportunity for a meeting with the whole family to explain some specifics about your child’s illness in age appropriate language.
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Some upcoming topics will include
• My Child’s Illness is Ruining My Marriage
• How Do I Discipline a Sick Monster??
If you’re a parent or a family with some great ideas or advice for the “other child in the room” please leave me a comment!