4. Come up with a strategy to meet their needs. This is where your creative thinking can come in. Is it important to them to go out to eat with their friends? Is that at a place that’s not serving food you know is safe for them? What can you do about that? The answer is not automatically to deny them access. Look into ways to make it safe for them. Do they eat the burger without the bun? Do they need a digestive enzyme to eat select foods there? If you and they look at the menu together, can you arrive at menu selections that could work? Remind them that, at the end of the day, others are far too self-absorbed to be really thinking about what they’re eating. If they’re at the same restaurant together and they find ways to order foods that don’t make a spectacle of themselves, they can be there, be present, and participate. That may be what’s most important to them. Or is it a sport that’s what’s most important to them, and they can’t play at the moment? Is there another role they can take on to support the team and stay with their peers? Can the coach help brainstorm ideas? Or if they’re too ill to go out, or peers are having difficulty adjusting to your teen’s needs, is there another activity that could work? A less physically demanding activity or a safe online activity, such as gaming? Is there another topic altogether that they want to pursue? What can you do to help make that happen? Don’t worry about “indulging” your teen; they’re already grappling with more “reality” than most adults can handle. Your goal here is to keep their spirit alive.
5. Communicate fairly. If your and your teen’s perspectives about what should happen are quite different, use “I” statements to tell them how you feel. “I’m concerned that you won’t be safe in that environment,” is a lot less contentious than the Dictator’s “No.” Or, worse, the Shame Game of “You need to grow up and face reality.” They’re already being forced into premature maturity by their illness. The call to action for us parents is to rise in maturity ourselves. The rules of fair communication apply here more than ever. Own your own stuff.
6. Happiness is not the goal. Remember that sadness, grief, anger, and other emotions are every bit a part of the human experience as is happiness and joy. Even more relevant here is the fact that there is no arrival point in this situation. The outcome you’re seeking is not “Everything is OK now.” It’s not going to be. “Different now, and we’re coping” equals success. Don’t expect things to feel good all the time. And equally important, don’t judge that NOT feeling good is failure. This is a process. It’s dynamic. Walking through pain is just that: a journey. If your teen is expressing signs of serious depression, however, seek professional help from a licensed counselor who has experience not just with their age group, but with chronic illness.
7. Get help when you need it. Remember, you’re grappling with your own grief about what’s happening to your child. Seek help to move through your own emotions so that you can be clear-headed and able to respond appropriately to your teen. Your teen may not, or may not be able to, rise to the call of what this illness asks of them right now, or do so all at once; they’ll need time, and you need time, too. The guidance of a trusted professional counselor – not the same counselor that you’ve hired for them – can be an important tool in your toolbox for regaining some hope and sense of self control.