Parents and caregivers often have to juggle appointments for their family. You may need to deal with information from several health providers in the hospital, the local community, and your child’s school. Keeping track of all this information can be overwhelming.
Working with those involved with your child’s care can support what you’re already doing for your child’s well-being. Here are some strategies to help empower you in this process.
Communicating with your child’s healthcare team
Your child’s healthcare team is there to help your child. But, meeting with them can bring up many different emotions for you and your child. Preparing for these appointments can decrease stress and help you get what you need out of the appointment.
Before your appointment:
- Prepare questions. It can be difficult to remember information when we’re under stress. Try writing a list of goals and questions you wish to share at the appointment.
- Think about bringing a support person. It may help to bring a trusted adult to your appointment. They can help to take notes and offer support. Check with your child’s clinic ahead of time to see if your support person can come to with you.
- Think about any extra services you might need. If English is not your preferred language, let your clinic know that you will need someone to interpret or translate. You can also tell them if your child may need support before or during their appointment (For example: for anxiety or behavioural challenges). A Child Life Specialist may be able to help.
- Plan your visit. Make a travel plan, look up the address and how to best navigate the building if it is large. Be sure to leave extra time to navigate transit, manage traffic and find parking.
During your appointment:
- Keep track of information in a way that works best for you. It may help to keep a folder or binder with your child’s information, for example, materials you ask for or notes you take. For others, keeping information on your phone or tablet may be better.
- Share your thoughts and feelings. It’s important that you feel heard and get what you need during the appointment. Let the healthcare team know how you would like to receive more information to take home (For example: handouts, drawings, web resources). Tell them what you hope to get out of the appointment and any concerns you have with the treatment plan. Ask questions if anything is unclear.
- Clarify next steps with the healthcare team. Make sure you understand what will happen next. It can be challenging to take in all the information on the spot. Ask if there is a way to contact the team if you have questions. If your child is cared for by many professionals and you feel it’s important for them to communicate with each other, feel free to bring this up.
After your appointment:
- Take time. Give yourself the time you need to think about and organize the information you received at your appointment. Write down any questions that you have.
- Take care. Healthcare appointments are important, but can also be stressful. Take some time for self-care if you’re able to.
- Support your child’s feelings after an appointment. Chat about their experience and any questions or concerns they have. Children often look to their caregivers to support and guide them as they process their experiences. When you validate their feelings, it helps them deal with their emotions.
- Find out about the waitlist process. Your healthcare provider may refer you to a specialist or service that has a waitlist. It can be very hard to wait for that support. Learn more about what you can do if your child is on a waitlist.
Communicating with your child’s school team
Your child’s school plays an important role in their life. You may meet with teachers, administrators or school psychologists to decide on how to best support your child.
It may help to prepare for these meetings by learning more about how your healthcare and school team work together. Ask the healthcare team to explain the support your child has access to at school. Here are some things to think about before you meet with your child’s school team:
- Request a letter. Ask your child’s healthcare team to write a letter that explains your child’s condition and what they recommend.
- Ask about getting a school designation. This means that your school recognizes your child has special healthcare needs (For example: a chronic health condition, mental health needs or learning challenges). To get a designation, your child may need an evaluation by their doctor, a specialist, or a psychologist. Learn more about what it means if your child receives a school designation, here.
- Explore how to get an Individualized Education Plan (IEP). If a child has a designation in school they have access to an IEP and extra support. An IEP includes:
- goals and strategies to help your child at school
- services and resources that are available
- ways to track your child’s progress
Learn more about IEPs, here.
- Discuss communication between the healthcare team and school team. It can be helpful to talk about ways the two teams can communicate (For example: the hospital’s nurse practitioner speaks directly with the school nurse).
Before the school meeting:
- Talk to the school. Talk with your school contact person before the meeting. Ask them to explain the school’s procedures, and help you navigate them.
- Plan ahead. Write down questions and anything you would like to discuss. This could include information on your child’s strengths, interests, learning styles, and what you would like the school to know and understand about your child.
- Think about bringing a support person. It may help to bring a trusted adult to your meeting. They can help to take notes and offer support. Check with your school contact ahead of time to see if your support person can come with you.
- Invite your child to attend. Your child is entitled to come to the IEP meeting and is encouraged to attend, especially in high school. Discuss and decide with your child if they would like to attend the meeting.
During the school meeting:
- Remember that you are an important part of your child’s team. You know your child best and can help the school get a better understanding of them. This is also a great time for you to ask questions and get more information.
- Bring your child’s information. Bring any letters, reports or other related documents to your child’s meeting. Ask the school staff to make copies if needed.
- Work together to set realistic goals. Work with your child’s school team to come up with 2-4 goals for your child. To develop goals, you might use SMART (Specific, Measurable, Attainable, Relevant, Timely).
- Explore ways to have ongoing communication. Before the meeting ends, share what kind of communication (For example: email or phone) works best. Talk about how often you’d like to connect. It may include regular communication to review your child’s IEP together, especially around major changes (For example: moving from elementary to middle school).
Preparing and involving your child in their care
It may be hard to know when to include your child in their own healthcare
and education planning. You know your child best and can involve them in a way that feels meaningful for them and their age. By ages 9-12, most children are ready to be more actively involved.
Here are some suggestions:
- Be honest and open when talking about their healthcare appointments and school meetings.
- If they don’t seem ready, try having the discussion again at a later time
- Include them in decisions about their healthcare and school experience in a way that feels meaningful for you both
- Encourage your child to ask questions and share how they are feeling
- Before any hospital appointments, look into any tours or preparation programs the hospital may provide, including support from a Child Life Specialist
- Allow and support their privacy when it’s safe to do so
Remember, it is normal for both you and your child to feel a range of emotions on their healthcare and school journey. Think about how to manage stress as a family and check out ways to
Prepare for your child’s appointments in a way that works for you. This can also be a step towards working well with your child’s healthcare and school teams. The appointments still may not always go as planned. Be kind to yourself, trust your instincts, and try to remember there will be ongoing opportunities and resources to support your child’s well-being.