You (& your child) get to decide how and when to share your child’s diagnosis and details related to their functioning with people even when they ask. Being curious doesn’t entitle someone to an answer. It can be helpful to have a planned response for such times, such as: “ Thanks for being concerned/interested in (child’s name). We choose not to discuss that with you right now.”
1. Have an “elevator pitch answer” ready to go.
Sometimes people will ask about your child’s difference and you may want a quick way to explain it. Think of this like the elevator pitch that salespeople learn. They have a speech where they can pitch their product in the time it takes the elevator to get them to their floor. I have Cerebral Palsy and my elevator speech to a curious adult is, “Thanks for asking. My diagnosis is Cerebral Palsy. It is a neurological problem caused by premature birth and it affects my balance and the tightness of the muscles in my legs.” I also explain this to kids a lot, in the playroom at work and in public places like the grocery store. I usually say something like this, “ You’re really paying attention! You noticed that I walk differently from other people. I have Cerebral Palsy, that means that my brain which is like a big computer has a little difference. Instead of telling my muscles to work like most people’s do, my brain tells my muscles to be tight all the time and my body is always a little off balance.”
2. Look to your child to see how much is appropriate to share.
If your child is able, discuss with them how and when they want to discuss their difference with friends, classmates, etc. If they are unable to communicate verbally, pay attention to the ways they do communicate with you to gauge their awareness and level of comfort with these conversations and adjust accordingly.
3. Sometimes it’s helpful to officially share about your child’s differences
For some families, it feels most helpful to have the child address their class at the beginning of the school year and explain their difference so that they can have some more control over how their difference is understood.
4. This isn’t the end all be all, you can adjust the way you communicate at each developmental stage.
These conversations will need to be tweaked over time as your child grows both developmentally and socially. Sometimes different people or situations will require different conversations. Be willing to shape and change your explanations, as it feels right to you, your child and your family. Trust yourself and your child when navigating these situations. Also, be patient with yourself and your child. These conversations may bring up difficult feelings or painful interactions.
5. Remember to prioritize self-care!
Having conversations where you or your kid explain their difference can be difficult but even when they are good conversations they can still leave you feeling depleted. Self-care is important. This could be journaling, going for a run or making time to talk to trusted friends. Your child also needs self-care during this time. It can be time alone doing a favorite activity or engaging with family or friends to play or talk through their feelings.