Letting your loved ones know how to help can minimize misunderstandings and open space for all to work together and make your family’s and your child’s life as comfortable and meaningful as possible. You will likely hear “Let me know if there’s anything you need” more than once. But if (or when) you are overwhelmed by a new diagnosis or by the everyday stress of your child’s care, you may not know exactly what you need or have the energy to reach out. In an ideal world your extended family and friends would just know what help to offer.
 
The reality is that you may need to be specific and direct in stating what you need. Some families find that the Ring Theory of Support is a helpful framework for establishing roles on your support team. As everyone understands their roles, it will be clear that you and your co-parent, if there is one, know what is best for your child and family, and are making decisions in their (and your) best interest.
              
Consider that different members of your support circle can have different roles. For example, you may need help with practical things like grocery shopping, cleaning or even laundry. If you have other children you might ask for play dates, or transportation to and from school, or adult friends to attend school or community events when you cannot. You also may want to consider adopting an online resource that allows you to specify your needs and others to volunteer and schedule assistance. Having a family member or close friend act as a communication hub can be helpful, and in most instances, this person will be so glad you asked. And, of course, there are the people you want to rely on when you need emotional support.
 
Communicating about roles can be awkward. However you choose to share your journey and whatever the roles you assign, well-intended loved ones may have other ideas. They may want to take on different tasks, or share their thoughts and feelings with you. Your extended family and friends may have strong opinions and/or beliefs that align with, or contradict, your own. You may consider this an extra burden. As you make decisions, you may choose to consider their input or not.      
    
You may find over time that your community circles change. People you thought would support you may not, or they may draw close initially and then drift away over time. They may not know what to do, be scared to say the wrong thing, feel helpless or overwhelmed by their own emotions, or not want to intrude. Whatever the reason, this can be very painful. At the same time, other people (some unexpected) may show up in the most helpful ways, strengthening your bond. Forming connections with other parents of children with serious medical conditions can also feel very validating and supportive.