Getting Started After a New Diagnosis
When parents first hear their child has a chronic illness, they often feel overwhelmed. While some parents say they had a feeling that something was not quite right, other parents say they were completely surprised when they learned of the diagnosis.
Take a deep breath and think of how this is affecting you. Some parents are angry while others are relieved they now know what is going on with their child. Now take a moment to think about what you need.
Some parents want to talk to another parent whose child has a similar diagnosis or find a support group. Some parents want to learn everything they can about the diagnosis and its treatment. And for other parents, the most important first step is learning what they need to know to care for their child, how to find help and resources in their community, or find ways to organize their child's care and health information.
The following are tips from other parents about what helped them after a new diagnosis:
- Look to Other Parents
- Understand Your Child's Diagnosis
- Gather and Organize Information
- Take Care of Yourself
Look to Other Parents
"For me, my greatest resource has been other people, other parents, and the Parent to Parent support group. I think if there is a support group, you should get into it. That is the very first thing. If you have a diagnosis, the smartest thing you can do is find another family with the same diagnosis.”
You aren't alone. Find a local or online support group to chat with other parents. Talking with other parents can give you energy. Here are a few ways to find support groups and other parents:
- You can find other parents through the following groups:
- Ask your child’s doctor, nurse or teachers if they know another family whose child has the same diagnosis or needs.
- Find a support group through Seattle Children's
Understand Your Child's Diagnosis
“My child’s doctor told me 26 years ago, ‘I insist you know more about your child’s disease than I do, because you are going to live with it.’ I learned that 26 years ago and I have passed it along to everybody.”
On the Diagnosis Information page, you will find a list of pediatric chronic health conditions and links to websites that provide an explanation of the condition and additional resources.
Gather and Organize Information
"There is so much to learn and know. Where do I begin?"
There are many resources in your community that can help you care for your child with special needs. The trick is figuring out where to start.
Here are a few things that may help:
- The Guide to Washington State Care Coordinator Roles page provides a list of organizations and professionals who can help connect you to resources, services and support if you live in Washington State.
- The Help Finding Resources for Your Child with Special Needs page provides a general list of people and places who may be able to help you get started, especially if you live outside of Washington State.
- The Resources Directory searches resources mainly in Alaska, Idaho, Montana, and Washington based on your needs.
- Once you have narrowed down who to contact, review the Tips for Getting Answers to Your Questions.
Once you start finding resources, you may need to jot down information in order to remember things or you may collect or be given lots of written information.
There are tools available to help you:
- The Care Notebook has many pages that may be helpful in organizing your child’s care.
You can choose the pages that will help you; fill them out and save them on your home computer or you can print them and fill them in by hand. You can print the pages and keep them in your Care Notebook and bring the notebook to your child’s appointments so that you have the information readily available.
- The Care Organizer is a file folder that allows you to keep and organize written information about your child’s care. Washington State families of a child with special needs may order one copy of the Care Organizer for each child with special health care needs at no cost.
- The Care Plan for Parents is a great way to help coordinate your child's care. If you are given a lot of information about caring for your child, creating a care plan may help make the information more clear while helping others who assist in your child's care (such as a babysitter, child care facility, or school nurse) remember what needs to be done.
Take Care of Yourself
“Take care of yourself so that you can be your best for your child.”
- It’s a lot of work. Take a break to recharge yourself or ask for help.
- Give yourself time each day, 10 minutes or more to do something you like.
- There is a lot of information. Set a limit on how much time you will spend looking or reading.
- You may not be able to look for everything at one time.
- Tell your child’s doctor how you are doing. Ask him or her to help you focus on what is
- Share your feelings with your family, friends, other parents, doctors, and nurses.
The Real Families: Real Suggestions for Everyday Living section can help provide ideas and strategies shared by other parents about caring for your child with special needs in everyday life.
- Starting Point Guide
- Guia Para Padres
- Autism Resources for WA Families
- Autism Resources in Spanish
- Down Syndrome Resources for WA Families
- Down Syndrome Resources in Spanish
- Epilespy Resources for WA Families
- Epilespy Resources in Spanish