Most parents we’ve talked to agree that the moment they heard a diagnosis for their child was an unforgettable one. Our Personal Stories About Receiving a Diagnosis for Your Child page shows the different ways that parents reacted in the moment and how they managed to move forward with their child’s care. We hope that these stories help you know you’re not alone, no matter your experience.
If you suspect that something is different, it’s important to do 2 things: Look at developmental milestones so you know what typically developing children look like and talk with your child’s doctor as early as possible.
If your child doesn’t have a diagnosis, keep seeing your child’s regular doctor. Look for university or medical center research groups that might be working to understand your child’s condition or specific symptoms. Connect with other parents or emotional support and education. Keep doing your own research too. Visit the When Your Child Has a Rare Condition, Multiple Diagnoses, or Is Undiagnosed page for more tips.
The need for a name to put around your child’s symptoms is important. It helps you access services. It helps you connect with other parents who are in similar situations. It helps you learn what you can do to support your child for the best possible life. Visit the When Your Child Has a Rare Condition, Multiple Diagnoses, or Is Undiagnosed page for more tips.
You might be worried about a friend or loved one’s child. If you suspect that something is different, think 3 or 4 times before you say anything. Respect the parents’ privacy and emotions. Speak from personal experience if you have any to offer. Understand that the parents might not be ready to act on what you tell them today. Try not to overwhelm them. But show your positive love for their child.
If your child is an infant or toddler, it is very important to ask for Early Childhood Intervention (ECI) services. Do not delay; ask for your child to be evaluated for these services.
At any age, work to understand your child’s diagnosis. Create a vision and plan for your child. Create a care notebook to keep your child’s medical records organized and in one place. Our Organizing Medical Records page can help you learn more about creating a care notebook. Connect with other parents might be going through the same thing you are. And take care of yourself and your family.
See more on our My Child Has a Diagnosis. Where Do I Start? page.
Talking to your child’s doctor can take practice. Doctors and their office staff should listen carefully when you and your child express needs and preferences. They should answer both of your questions in a patient, kind, and easy-to-understand way. They should do their best to make you and your child comfortable. They should treat your child respectfully, as a person with unique needs. Learn more on our How to Talk to Your Doctor page.
Try to schedule your visit at a good time for your child. Ask for extra time before you go to the visit. Bring snacks, toys, books, or games to keep your child occupied. Try to act out the doctor’s visit with your child before you go. Ask your doctor’s office to prepare a special waiting room or quiet area, if your child needs it. See more tips on our How to Talk to Your Doctor page.
A medical home is a type of relationship with your child’s medical team. In a medical home, one central contact coordinates care for your child with a disability or special health-care needs. The medical home team works with your child and family to make sure all medical and non-medical needs – including educational services, family support, and out-of-home care – are met.
Children with disabilities or special health-care needs often see many doctors and specialists. Having all of that care coordinated through 1 main contact will make your life and your child’s life easier. Your child’s medical home can help connect your family to support groups, parent-to-parent groups, wellness programs, and other community services and supports.
We’ve heard that many parents find a care notebook to be the best way of keeping everything organized. Think of a care notebook as a 1-stop shop containing everything that family, doctors, therapists, and members of their school or care team would need to know about your child. Learn more on our Organizing Medical Records page.
Make a list of the things you refer to most about your child, such as reports from their doctors, lab results, vaccine records, care plans, hospital stays, school records, etc. Decide how you want to organize it. Some parents use a 3-ring binder, while others prefer a virtual care notebook on their laptop, tablet, or smartphone. Learn more on our Organizing Medical Records page.
Businesses that sell durable medical equipment and supplies are called DME providers. They will also handle your insurance claims. If you have an insurance or Medicaid case manager, ask for their help to find an in-network DME provider. Connect with other parents or get recommendations from your doctor or therapist to find a DME provider.
It’s important to find a dentist who respects your child’s differences – and one who understands sensory issues, anxiety disorders, or other unique concerns. Connect with other parents to get the names and numbers of dentists they’d recommend. Check out dentists who specialize in pediatric care. Look at a support group online for your child’s specific disability to see if anyone has recommended dentists or creative ideas for when you visit the dentist. See our Dental Care page for more tips.
Thinking out of the box helps establish trust between your dentist and child. When a visit is getting too long, for example, a dentist might be willing to split a routine checkup into 2 different visits. Write a brief letter about your child’s diagnosis, what you or your child is doing to take care of their teeth at home, and any struggles you have. Ask ahead of time for a private room, extra time with the dentist, and extra staff for a teeth cleaning. If your child is already going to have anesthesia for 1 treatment, consider combining many things at the same time. Maybe a cleaning, X-rays, fluoride, and stain removal all at once. See our Dental Care page for more tips.
Early Childhood Intervention (ECI) is a statewide program for children with disabilities and developmental delays from birth to 3 years old. It supports families like yours. Support services can include case management and specialized skills training; deaf education and vision services; physical, occupational, and speech therapy; nursing and nutrition services; or social work and counseling services.
If you suspect problems with your child’s abilities and growth, don’t delay calling Early Childhood Intervention (ECI). This is not a time to wait and see. As a parent, you can make a referral yourself – call ECI and see what they can do to help. When you call, staff will explain ECI services, talk with you about your concerns, and answer any questions that are important to you. Together you can decide if you want to continue with ECI and get your child evaluated.
Using an Electronic Health Record (EHR) gives your child’s doctor a way to keep track of your child’s patient record and treatment notes electronically and securely. Some doctors can give you access to parts of your child's EHR through patient websites. EHRs and patient websites allow you and your child’s doctors to work together to coordinate your child’s health care.
Many doctor’s offices and insurance companies are starting to have web or mobile apps so that you can make appointments, get lab results, or look at your child’s health information from your laptop or smartphone.
The term "mild brain injury" is misleading. Concussions and other mild brain injuries in children are always something to take seriously. While most children who have a concussion or other mild brain injury recover with rest, there is always a risk of brain damage and disability if they do not get proper care and follow the doctor’s treatment plan. Learn more on our Traumatic or Acquired Brain Injury in Children page.
Some signs or symptoms of a brain injury might show up right away, while others might not show up for hours, days, weeks, or even months. If you suspect your child has had a brain injury, call 9-1-1 or take them to the emergency room right away. If in doubt, call 9-1-1 or ask for a doctor’s opinion.
See Traumatic or Acquired Brain Injury in Children for a list of symptoms of a brain injury.
The road to improving behaviors starts with believing that your child – no matter what their behavior looks like now – can change with the right support and knowledge. An important first step for parents of children with disabilities or special health-care needs is to understand why behavior problems are happening in the first place.
See our Behavior Management for Children With Disabilities page for more tips and strategies.
For many children with disabilities, tantrums are a sign of frustration with their world. Maybe they can’t communicate the way they want to or process all the information coming at them. For children with sensory issues, ordinary sights, sounds, smells, tastes, and touches can be almost painful, causing a behavioral reaction. There are changes you can make at home to help lessen the chaos, empower your child, and give your family a gentler life.
See our Behavior Management for Children With Disabilities page for suggestions and strategies.
You know your child better than anyone else, so you are probably the best person to know when they aren’t acting like themselves and need help. It’s very important to act. Begin by talking to your child about what you’re seeing that worries you, or find them a counselor or other mental health professional to talk with.
See our When to Get Mental Health Help for Children page to see some of the signs and symptoms to pay attention to.
The Americans with Disabilities Act (ADA) covers “a physical or mental impairment that substantially limits one or more major life activities of an individual.” This includes protections for people with mental health conditions in education, employment, and government services.
See our Education and Schools section to learn about education rights, and our State Agencies and Services pages for more about state services. See Your Child’s Rights to Mental Health Services for more facts about your child’s rights.