Communicating with others about your child's needs

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When you are the parent of a child with a complex condition you will need to talk with many different people. Learn some strategies to help with this communication.

Key points

  • Parenting a child with a complex medical condition will mean that you have to talk to many different people such as health care providers, other care providers, teachers and support services.
  • Understand who you are talking to and what their needs are. This will help to strengthen your relationships and accomplish your goals faster.
  • Consider learning or improving your own skills. These may include team building, research and observation, teaching and self-care skills.

Successfully parenting a child with complex medical needs requires an incredible amount of dedication and excellent communication and interpersonal skills. When you are stressed, you may feel so overwhelmed that you have trouble relating to others or properly organizing your thoughts. Here are some helpful strategies that may help during these times.

Get organized

Being a full-time case manager on top of parenting a medically complex child can be a daunting task. Finding ways to do things faster and smarter can make your life easier down the road. Read our time management and organization tips.

Apply the #1 rule of marketing: know your audience

As your child's case manager, you will need to speak with a wide variety of people from all different walks of life. Understanding the mindset of the person you are talking to will help to strengthen your relationships and accomplish your goals faster:

  • When meeting with a new health care provider, create a brief medical summary (no more than two pages) with an overview of your child's condition, significant hospitalizations, surgeries, date of birth, current weight and a list of all medications and dosages (prescription and non-prescription).
  • When talking with the doctor about your child during routine health care appointments, it may be helpful to prioritize your list of questions. Sometimes appointments will get changed or doctors can be called away unexpectedly. Decide which questions need to be answered immediately and which ones can be emailed or left to be answered at a later date.
  • When you are teaching care providers about your child's needs, consider all the different learning styles people have. Find ways to educate people about your child's needs through visual presentations, interactive tools, written instructions, practical demonstrations and conversations. Allow lots of time for questions and provide on-going opportunities for people to give you feedback on how to improve the way you work together.
  • When requesting accommodations at school, it may be useful to create a mission statement with a list of goals. Focus on your child and how you can collaborate as a team to help achieve your child's goals rather than creating a list of things you need from people.
  • If you are applying for health support services or advocating for your child, prepare a case summary outlining the current situation and the challenges. Provide a written solution and then ask clearly for what you need. Take extraneous emotion and blame out of your case summary, as this will weaken your request.

Empower yourself by improving your skill-set

You cannot learn everything in a day, but even just re-framing your thoughts and putting yourself in the position of being a life-long student will help pave the way towards a more balanced life.

  • Team building skills: Share the responsibility of caring for your sick child. From your partner, your friends and your health care team to teachers and care providers, everyone has an essential role in supporting your child. Think about ways to work more effectively with these people and help them be successful in their day to day support roles. Try to keep the focus on your child rather than what you need from everyone.
  • Research and observation skills: Only you can be the expert about your child. Take the time to learn everything about your child's condition. Create a good organizational system to record symptoms, behavioural patterns and developmental milestones.
  • Teaching skills: When educating people about your child's needs, recognize that everyone has a preferred learning style. Create teaching aids that speak to visual, auditory and practical learners.
  • Self-care skills: Coping with your child's illness as a parent requires you to take care of yourself. Letting go of the guilt and allowing time to rest and recharge your batteries is easier said than done. Try to proactively schedule downtime, even if only for 15 minutes, and get in the habit of allowing others to help you in times of need.

Get personal

You may be working within the limits of several complex systems, but only a person can change and improve on these systems. Going out of your way to be nice to the people you are working with will help you reach your goals faster.

  • Learn the full names of everyone who is helping you. Request meetings in person or speak to them on the phone and then follow up with an email to make it easier for people to refer back to your conversation.
  • Recognize when something is working and strive towards creating a model of success. Go out of your way to give heart-felt thanks when someone has really made a positive difference.
  • Be respectful, no matter how frustrated you are with the system. Be clear with what you want and make the effort really listen to what people are saying to you. Rather than demand to be treated a certain way, command respect from those around you by following up, being clear and being reliable.
  • When you have a major concern, write down exactly what the problem is and think about the best person to approach. Sometimes just writing everything down will help to organize your thoughts so you can proactively go about finding a solution. No matter how angry and frustrated you feel, try to stay positive; you will get what you need faster if you can remove your extreme emotion from the situation.

Communication and interpersonal skills take time to acquire and learn. If you make a point of investing time to become aware of how you are communicating with others, you may find that many aspects of your life, including the way you manage your child's health condition, will begin to improve.

Last updated: June 13th 2012