Finding out your child has chronic condition or disability can be devastating. You may have feelings of sadness, confusion and hopelessness. On this page, a parent of a child with special needs shares her experience, insight, and wisdom that she learned from parents like herself.

Dr. Jerome Groopman states, “Hope is a decision, not an emotion nor a feeling.” From a parent’s perspective as long as you have hope, you can overcome the most difficult of times or challenges.

Some children get a diagnosis early on, sometimes even before birth. Other children may get a diagnosis much later due to illness or accident. My son was still very young when we learned he had Cerebral Palsy. No matter when or what the diagnosis is, it can be hard to see your child not reaching typical milestones, dreamed expectations, or optimal health. Most families of children with special health care needs have similar feelings and challenges and can be a rich source of support, information and assistance.

When you work with doctors and medical professionals, you may find it hard to ask questions or not know what questions to ask about your child’s needs and services. The truth is, none of us know everything, even doctors don’t have all the answers right there, and may have things to learn about your unique child. It’s important to build trust with them, as your relationship with them is likely to be long-term.

Although doctors have had years of medical training, you have the training on your child. The goal should be to work together, as a team, for your child. You have a voice, and you can tell them how you feel and what your opinion may be. Sometimes your feelings may not even make sense, but parents often have intuition or “gut feeling” that can make huge differences in their child’s life. Don’t be afraid to ask questions or for them to explain things again if you need it. You are the one who will take this child home after the doctor visit, and knowledge will help you to be more confident as a caregiver. You are your child’s best advocate!

Keep a binder with all of your child’s information

You may feel lonely for a while, as some of the people you know cannot begin to understand what to say or how to react to your new situation. As you navigate through the special needs community with your child, you will meet new friends in new circles who will understand.

You will meet other parents who have children with special health care needs that you have a common bond with. You might meet someone at the doctor’s office, or at a support group, or in an online group. Seek these people out. Some of them will become life-long friends, and the bond you share may be greater than you have ever had. These friends will understand that part of you and your family that others may not, and you will understand what they have gone through. Your friends who are having a hard time understanding what you are going through may come around and get it, so don't give up on them – they are still important, and we need all the friends and support we can get!

Look for a parent support group with others who are going through similar situations

Set up a support system and don’t be afraid to ask for help

There are so many resources out there for you to get information. Below, you’ll find a few that can help your story be a success. There are organizations to help you find resources and refer you to agencies that may be helpful.

Family-to-Family Health Information Centers (F2F HIC)

Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs)

Early Intervention