- My child is not a guinea pig. While I will listen to all you have to say about medications, you seeing her for a sub total of 15 minutes without consulting me, her doctors from outside, her teachers, or even HER does not give you the right to haphazardly recommend medications that are so outside of what is known safe for kids or adolescents and are completely irrelevant for her documented diagnosis. I don’t want to hear, “well this may work but it may not or it may give her this side effect or that but then we’ll just give her another medication to treat that symptom”. No. Gather information first. Call all of her doctors. Talk at length to me. Talk at length to her. Investigate. Don’t be fucking lazy because we are talking about a person and treating a person with mind altering drugs. For fuck’s sake.
- It is really important for you to try to be on time when we have meetings. Believe me, I get that we’re all busy and that things come up, but if you’re more than 15 minutes late to a meeting, that is more than rude. It basically tells me that we are unimportant to you. That you have better things to do than to meet with us as scheduled. You’re telling me that we are the last item on your to do list. We as parents often have to rearrange our whole lives around this. Everything is turned upside down. Our employers often don’t understand the way they would if we said “my daughter has cancer and I need to bring her to the doctor for chemo”. So when we rearrange our whole lives to accommodate a family meeting to talk about the course of care for our child, the least you can do is be on time.
- You need to have more in your bag of tricks and your treatment plan than teaching coping skills. While I agree that teaching coping skills is a good thing, it is certainly not the only thing nor is it the first thing to be addressed. How about getting to some roots of the issue. How about helping my child figure out what the hell she’s feeling. How does she know what kind of coping skill she needs if she can’t even accurately identify her feelings. If someone came to your office with chest pains, would you immediately talk about diet and stress or would you maybe run many tests to figure out what the hell is going on with the heart. And then when you find out what is wrong with the heart would you only teach the person coping skills to heal the heart? No, I don’t think so.
- My daughter is a child. She may be a teenager but teenagers are still children. Please handle her with care. Please understand that she is confused all of the time. Please know that she did not do anything “wrong” but rather that she is sick and needs help. Again, would you blame cancer on the patient or would you just do all you could to treat it. My daughter is depressed. She doesn’t deserve to be depressed. She is debilitated by her depression and she wants help but she may feel too tired and too overwhelmed and too sick to overcome it. This is where you come in. Please help her get stronger. Soothe her mind. Help her make new connections. Be empathetic. Listen. Just listen. If she doesn’t talk, just be with her, without judgement. Hold space for her when she cries or when she gets angry or is frustrated or puts her head down on the table. Help her see the sun again. Please.
- Please don’t talk about insurance, money, co-payments, or approved length of stay in front of my daughter. Ever.
- Please make your group sessions and activities appropriate for the age group. These teenagers are caught between childhood and adulthood but they are really trying to get to the adulthood side of life in one piece. You running a group on the 5 senses for a group of 14-18 year-olds may not be relevant or appropriate for the age. The teens will only roll their eyes more at you when you run groups like this and then you’ve lost them for the day. Immerse yourself in the teen world of today because these kids need allies and people to help them navigate their world but in order to do that you need to know their world. They will trust you more, open up to you more, work with you more if you are actually interested in their interests. Make the effort, it’s worth it for everyone.
- We may need you to think outside the box. What else can we do? What can we try? Can you bring in pet therapy? art therapy? music therapy? anything? When my daughter was at Children’s, Ryan Seacrest came to visit with some celebrities and many of the critically ill patients at the hospital got a visit from them. But not the psych unit. This needs to change. 18.2 percent of the population in the United States are affected by mental illness. 18.2 percent, roughly 42.5 million people. Take that in. We fundraise our brains out for diseases and illnesses that affect far less so why don’t we do the same for mental health? Mental illness can be just as serious, just as debilitating, and just as deadly as other illnesses but it is stigmatized. We are told, buck up, put on a happy face, get over it, look on the bright side, be positive, use coping skills and move along. Well guess what? My daughter was critically ill when she was at children’s and could have died and maybe, just maybe she would have benefited from a visit from Ryan Seacrest. Maybe. Probably not Ryan but maybe someone else, like Justin Bieber. Whatever. These kids should not be ostracized because their illness is a mental one.
- Please handle all of us with care. Have a bedside manner. We are navigating a difficult, broken, and confusing system that makes no sense at times. You are our lifeline. Please don’t let go of us or assume that we know the way because chances are we don’t. Please try not to lay blame on parenting or personalities because you wouldn’t do that with a physical ailment. Keep an open mind, be a good listener, empathize, help us. We need you and are relying on you. If you don’t know the answer, don’t make one up, but instead research it and find it out. We can wait. We need someone on our side, someone we can trust, someone to be our voice, and someone to help us find the way. You are it.
Finally, thank you. Thank you for going where few people would dare to go. Thank you for going there day after day and not stopping. You are invaluable to us and our child. Thank you.