What Should I Tell My Kids?

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Lisa here. Last week, Sarah introduced our new mini-series where we give tips for talking to your kids about sensitive topics. One of the subjects that often comes up for parents is how to talk to their kids about their medical, psychological, or learning disorder diagnosis. Most parents feel a mix of emotions upon learning their child’s diagnosis – relief at finally getting answers, worry about treatment and prognosis, hopes and fears about the future, etc. In the mix with all these emotions are thoughts about how to explain things to their child. What to tell them, how much to explain, when to tell them, or even whether they should tell them anything at all are decisions parents have to make at the time of diagnosis.
 
I have worked with many parents who have struggled with what to tell their kids about their diagnosis. This comes up frequently when I evaluate a child for ADHD or for a learning disorder. Some parents’ initial instinct is to tell their child nothing. Other parents want to tell their child something but have no idea what to say. 

Here are some general tips I give to the parents who want to say nothing:
 

• It’s better to tell your child the truth than to say nothing or make up something that you will have to come clean about later. Many parents work from the ignorance is bliss theory when comes to sharing information with their kids. But your child already knows something is wrong. After all, why else did they have to see all those doctors, have all those procedures, or sit through hours of testing? Your kids know when they don’t feel well or when they are struggling to learn. Having no name for what’s going on makes it scarier and harder for them to deal with.
• Related to the first point, if you don’t give your kids an explanation, they are likely to come up with something way worse than the reality. If your child has a medical issue, they may think they’re dying. If they have a learning issue, they may think they’re incapable of learning anything or that they will be a failure. In the absence of information from you, are going to come up with an explanation and they will operate based on that story.
• Even very young children can understand at least the basics of their condition. In fact, they often handle the news better than you think they will (or sometimes, even better than you did). 
• Your child’s diagnosis is theirs. Even though as their parents, you have the rights to their medical, psychological, and educational information, their diagnosis is something they will have to learn to cope with and manage, potentially for their whole lives. When they know what’s going on, they can take ownership. It’s a lot easier to get a child to engage in treatment or learn strategies when they know why they’re doing it. 
• Most importantly, when you have a matter-of-fact conversation with your child about their diagnosis, they learn that it’s not something scary or secretive. Like Sarah said last week, they learn that they can talk to you and ask questions and they’re not left to figure things out on their own. 

Once parents are ready to talk with their kids about their diagnosis, here’s what I tell them:
 

• Make sure you’re clear on the diagnosis and at least the basics of what it is and what it means for your child’s daily life. 
• When you are ready to have the conversation, make sure you are calm and can discuss things in a matter-of-fact way.
• Tell your child the name of the diagnosis. It’s not a secret and it doesn’t have to be scary. Remember, you will be giving them other information, like explaining the symptoms they have that fit the diagnosis, treatment options, and encouragement about their ability to cope with their symptoms. 
• Keep information developmentally appropriate. For instance, your 4-year-old doesn’t need to know all the ins and out about ADHD. Telling them what it’s called and that it’s the reason they have a hard time sitting still and getting their work done at school is a great start. A 15-year-old is going to need more information and will likely have more sophisticated questions. You know your child. Present the information in the way you know they have the best chance of understanding. 
• Be prepared to have more than one conversation. You do not need to give all the information at once. Also, your child will have questions later. As they get older and symptoms or treatments change, you’ll need to talk about that. 
• It’s ok not to have all the answers. If your child has questions that you’re not sure how to answer, write them down. At your child’s next appointment, encourage them to ask those questions. If you don’t have an appointment scheduled, most providers are open to making an appointment to talk with your child and answer follow-up questions. 
• Be honest. Even if some of the information you must share is stressful or sad, being up front about it builds trust between you and your child and confirms that you are a source of support for them. 

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