Processing the Diagnosis
After learning that your child has DD/ID you will have questions about the diagnosis, your next steps and what your child’s future may look like.
After learning that your child has DD/ID you will have questions about the diagnosis, your next steps and what your child’s future may look like. Understanding your child’s diagnosis and needs takes time and is part of a continuous journey to create the most positive environment for your child to succeed. The good news is that every day you will learn something new that will help to build your confidence in supporting your child. Through this process, it is important to remember that, like everyone else, your child has both strengths and challenges. Children with DD/ID will reach milestones at different times and will make progress at their own pace. Learning about the diagnosis will help you better understand your child's development and behavior and support their ongoing developmental progress. It will help you make informed decisions and become a stronger advocate for implementing the plan of care in school and at home.
After your child has been diagnosed with ID/DD, start by reaching out to your family or to other caregivers with a similar experience. They can provide support, understanding and advice on developing the plan of care.
After your child has been diagnosed with ID/DD, start by reaching out to your family or to other caregivers with a similar experience. They can provide support, understanding and advice on developing the plan of care.
“What did you do right after learning about your child’s ID/DD diagnosis?”
Parent Support
“Right after the diagnosis, I reached out to a parent support group and made a few good friends who were always ready to listen and help.”
Main Goal
“My main goal was to keep my child happy during intervention and to allow him enough time to relax and enjoy fun activities with our family.“
Normalized Life
“I made therapy fun and normalized my child’s life through art, dance as well as swimming through the Special Olympics.”
List
“I kept a list of my child’s strengths and celebrated any progress.”
Support
“Early on I talked to my family about my child’s diagnosis and felt supported.”
After the diagnosis, you will meet providers who will be able to support your child’s and family’s journey. For example, a physician (medical doctor) can explain the child’s diagnosis and address medical and educational needs. The physician can also help you develop an action plan for care and will be able to update you on your child's progress. The physician can provide referrals for interventions at home, school recommendations and guidance for accessing community resources. Developing a positive relationship with your child’s medical and educational providers will help you create a network of support and care for your child’s development.
How did you work together with your child’s physicians and health providers?
Questions
“Before the doctor’s appointment, I made a list of questions to be discussed.”
Written Recommendations
“I asked my doctor to give me written recommendations and specific information regarding my child’s intervention.”
Clarify
“When talking to a doctor, I was not afraid to clarify what I did not understand or what did not seem like a good choice for my child.”
Follow Up
“Keeping regular follow up appointments with my child’s doctor kept me on track with the care plan.”
Strength and Progress
“I looked for a doctor who talked about my child’s strength and progress and recognized my effort. This gave me the energy to be able to go on.”
