Another cancer mama has asked me advice on "what to do when your child gets angry at you because they have cancer."
Grace was diagnosed with high-risk PH+ ALL two weeks after her fourth birthday. Because she was so young I became the cancer to Grace. "Why are you letting them do this to me mommy?" wasn't a question I could adequately answer for her.
It was mommy who held her down to be poked with needles. It was mommy who gave her the medicine. It was mommy who made her hold still for the doctor. It was mommy who said no to the friend's party, no to preschool, no to the park. 99.9% of the time, it was me, in Grace's eyes, who forced the effects of cancer on her.
Children aren't old enough to realize that the only other option would be death. Death is an abstract concept for kids and therefore they have no gratitude for you working so hard to keep them alive. They just see the limits and pain. And they see you doing it to them. Grace needed me, and she knew that, but she also resented me for that help. She was so angry. So angry. And she directed all her wrath at me. Not only was I exhausted but I had a kid furious at me for taking care of her.
We found a few solutions that helped immediately.
- Give pre-approved choices whenever possible. "Do you want to have your ears checked first, or your throat checked first?" I remember one time Gracie blatantly refusing to lie down so the doctor could examine her tummy. "Will you put your head on the left or the right?" I asked her. "The right!" She shouted, triumphant to have control. Of course it was control I handed to her. Cancer kids are stripped of almost all their choices. Any pre-approved options you can give them will help them feel like they retain some of their power. Word of caution: don't give open ended questions like "would you like to take a bath" unless you can live with their choice. Two options tends to be best.
- Keep the family rules. I remember one of the first things we were taught when Grace was diagnosed was to continue to hold her accountable to our family's rules. We didn't listen. We eased up on the rules and the consequences. To our surprise, Grace got even angrier. The advice was right.
- When kids are in control of their parents they resent the responsibility, even as they fight tooth and nail to get it. The world is a scary place for them. If we are weaker than our kids how can we protect them from the even scarier and bigger world? They need us to be strong so they know we can protect them, guide them, and love despite their outbursts.
- Also, kids are super smart, even the young ones. If they see you suddenly stop giving them consequences then they figure they must really be sick, really weak, no longer capable of doing the right thing. By holding them to the basic family rules like no hitting, kind words, bedtimes (as much as possible), sharing, it helps them feel strong. It’s also one less change in their rapidly changing world. Kids feel proud when they do the right thing. Don’t take away that opportunity.
- Obviously you can't give spankings to cancer kids but there are many, much more effective consequences available, and I'd recommend Love and Logic for ideas on that.
- Find new activities for them to excel at. Grace used to love riding her scooter and playing on the playground. For a while those activities were either too difficult or too dangerous. So we started baking and arts and crafts instead. She really enjoyed those activities and it kept her mind off what she couldn't do.
- Play Therapy. When we could, we had her dolls act out what she was feeling with life. I'd play the doctor or nurse and her dolls could ask them questions she was too afraid to ask about herself. I also played with her a LOT more. Since she didn't feel well enough to self entertain and couldn't play with friends, I became her most constant playmate. That was hard for me but it built up intimacy. We noticed that the intimate playtime became really special to both of our kids when they were stressed out.
These are some tips that we've learned along the way.
- "I can tell/hear/feel/see you feel ___________, but it's not ok to ___________. You have choices to calm down and then we can find a solution."
- First, it recognizes the feelings. Kids feel safe when they're allowed to feel around you. Even if they are doing it "wrong," help them put words to the tantrum/screaming/hitting/etc and it helps bridge that communication gap. It helps them know you're on their side and willing to help.
- It puts limits on bad behavior. "...it's not ok to scream at me/talk rudely to me/hit me/ignore me..." are all acceptable limits.
- It teaches the child they can control their emotions. Choices can include: getting hugs, squeezing a toy, yelling in a pre-approved place, jumping jacks, taking deep breaths, etc.
- It allows for fair consequences. If a child does not choose to calm down and work out the problem then you can have consequences: timeout in pre-approved tantrum spot (1 minute per year old), having an "energy-drain," or loss of TV or iPad time. We've found these to be pretty effective.
- "I know." This one is a simpler version of the above, helpful when you don' have time to think. "I hate you for making me do this mom." "I know." "I don't want a poke." "I know." It's an empathetic reply that doesn't get into an argument. "I want to go home." "I know." It's a good statement for those days when you're too tired to remember your name but it helps your kid know that you're on their side.
- Redirect their anger. I remember the first time I told Grace that I hate cancer too. She was shocked. "I hate cancer and I am angry that it hurts you," I told her. It put us on the same team. "But we have to get you healthy, and this is how we do it and we can be brave together," I told her. Help them redirect their anger to what the real problem is. I remember one time Grace wanted the nurse and I to scream with her when she got an NG tube she hated. We did, we yelled so loud! And we were on her team, hating her cancer with her that day.
- When in doubt, structure! Structure! Structure! We learned this from Grace's therapist. Little kids strive on structure. They need to know what happened yesterday, what happens today, what’s going to happen tomorrow. Anything you can do to help them feel like they know what to expect in their lives will help lessen the stress. When Grace was first diagnosed we thought it'd be better to let the hospital trips be a surprise so she wouldn't be stressed out in advance. The older she got the more we let her know in advance and the more she would ask. She wanted to know how many days until the hospital, what was happening today, what was happening tomorrow. It helped her feel secure knowing what was coming and we could practice in advance to be brave. And by being honest with her, even letting her know when she'd get pokes, it helped her know I was on her team.
Even with all these ideas in practice we had some good days and bad days. I think what's most important to remember is to hold onto the good moments and let go of the bad. It's a beautiful thing that we got to tell Grace every morning, "God has forgiven us and given us new mercies today." We started fresh.
Most of all, remember that your child does love you. It's the cancer they hate. Even if they can't express it, they love you and need you. By showing up every morning you are being the parent they need you to be. It's a hard job being mom, but you should be proud of yourself.