Navigating Your Childs Care

A Practical Guide and Resource Directory for Children and Young Adults with Medical Complexity and Special Healthcare Needs


Learning your child is ill is extremely difficult and brings with it many emotions. These emotions can include: shock, anger, sadness, confusion, hopelessness and feeling overwhelmed. It is important to know that all of these feelings are normal. Learning to live with a child with medical complexity and special healthcare needs brings many new challenges for every member of the family. It will take time to adapt to these changes. Take one day at a time and know you are not alone.

Finding Help for Your Child
The path to finding ways to help your child may be very challenging. Don’t ever be afraid to ask questions. Although there will be many people involved in your child’s care, you are your child’s best advocate. The following are some tips from other parents who have children with medical complexity and special needs to try to assist you along the way.

Educate yourself 
Get information from doctors, hospital libraries, support groups, reliable internet websites, advocacy organizations and other parents. Learning about your child’s condition and available resources will help to prepare you to care for your child and face any challenges that might be ahead.

Reach out to other parents
You are not alone in this journey and it can be very helpful to speak to other parents who have gone through similar circumstances. Speaking to other parents can help you with emotional support, and finding resources that can help you along the way. Speak to your social worker or patient navigator about this possible option.

Develop a strong family-professional team
Although there are times when you might be frustrated, overwhelmed, and angry at the circumstances it is important to try to partner with health professionals as they are important in the care of your child. Try to find ways to communicate in a positive way and remain focused on what it best for your child. St Mary’s knows you are the expert when it relates to your child and is committed to providing “family centered care”.

Keep trying
If you do not get the answers or information that you are seeking it is important to continue to try to find them. There is so much going on at this time, don’t be afraid to ask others to help.

St. Mary’s provides a continuum of services and specialized in-patient care, day healthcare, rehabilitation, home care, and education services to children and young adults that are medically complex and/or have special healthcare needs, following an acute care hospitalization.  Our family-centered philosophy, combined with advances in medicine and technology, help children survive illness and injury once thought impossible to overcome. We welcome and thoroughly support children and their families every step of the way.