Keeping family and friends up to date

It’s up to you to decide what information you’re comfortable sharing and who you want to share it with. Telling people about your child’s diagnosis isn’t easy and keeping people informed takes up valuable time that you might not have. It’s OK at any time to tell someone that while you appreciate their support, you can’t talk right now. But family and friends can’t offer help and support if they don’t know what’s going on. By telling others, you can allow others to help you so that you can focus your time on your child and your family. Accepting help and support will help you and your family get through this.

Many families find it very helpful to pick one person to help them as a contact person. Ask a family member or friend if they can help you tell other friends and family about how your child is doing. Let the contact person know what information you would like to share and who you would like to share this information with. Keep this person up to date and then you won’t have to tell different people the same thing over and over again. If you are getting many phone calls, you can leave a recorded message on your phone thanking callers and directing them to the contact person.

Sending out a regular group email, updating a family web page or blog and using social media are also efficient ways to share news. You can ask a friend or family member to help or do this yourself.

It can also be helpful to have a contact person coordinate help and support from family and friends. Someone who knows what you need may be willing to coordinate meals, household chores or driving kids to activities so that you can focus on other things.