Navigating a New Diagnosis: 5 Things to Know, 5 Things to Avoid, & 5 Ways to Grow
By Anitra Rowe Schulte
Learning that your child has been diagnosed with a disability is a moment that many parents recollect with strong emotions. This post is designed to support parents who have had this experience, and provide understanding and focus for parents and children as they journey through life together. We hope that parents, family members, caregivers, and professionals will benefit from this information and share with others.
A doctor calls.
A geneticist rolls up a chair.
A teacher requests a meeting.
Your child has a disability.
Here is a print out about the diagnosis.
The link of a support group.
The names and numbers of specialists to call.
You exit the room, heart booming and mind swirling with unanswered questions, new concerns, and anxiety tied to the future’s unknowns.
If your child has received a diagnosis and you are feeling this way… Pause and take a breath. Your child’s diagnosis is a part of who they are and a reality that you can accept.
You were likely prepared for something different, unless you or someone in your family is disabled. Society rarely includes disability and human diversity in the parenting narrative. Instead, it often perpetuates that disability is something to fear. But disability isn’t rare at all and isn’t to be feared. It is a natural, important, and valid part of the human experience. As you and your child grow together in relationship and love, here are guideposts that can support you:
5 Things to Know
It’s going to be okay. You may not have expected this, but there is no reason to be afraid. The world is full of all kinds of people, and disability is simply another form of human diversity. Your child’s disability is part of who they are, and they deserve to be loved and accepted exactly as they show up in the world.
You and your child are not alone. Although we are led to believe that disability is tragic and rare, it is neither. Disability is seldom reflected in mainstream news, art and media, but about one billion people in the world (15 percent) have a disability. That makes disability the largest minority group in the U.S. and many other countries, as well. It’s also the only minority group that anyone can become a part of, at any moment.
Being a parent is hard, no matter what. And being a parent of a disabled child will be hard, too. There will be challenging moments, and at times they will be different from the challenges of parents of nondisabled children. Seek out supportive people and the resources you need. These are the tools that will help in tough times.
You will love your child. So much. You will worry about your child’s health and wellbeing, but that will not be the basis of your bond. You will snuggle and cradle and rock. You will sing songs and play games and go to amazing places. With every minute and passing hour, your love will grow and grow.
Your child will bring you joy. You will laugh together and be so proud of who they are, and you will share those proud moments with family and friends. Sometimes, you will worry. And sometimes, things will be scary. But those moments will not define you or your child, their life, or your relationship.
5 Things to Avoid
Avoid euphemisms for disability, such as “special needs” and “differently abled.” There is nothing special about needing support. We all need tools to thrive. When talking about disability, say the word. Civil rights and protections are connected to disability. It is important, powerful, and a valid identity and culture.
Avoid characterizing yourself as a “Disability parent,” an “Autism mom” or “Down syndrome dad.” As a parent, you will support your child in every way that you can, and you will find comfort and friendship among parents who have disabled children. But it’s important to remember that your child’s diagnosis or disability is theirs and not yours.
Avoid sharing medical information on social media. As parents, our children’s privacy is our responsibility to protect. Sharing medical challenges privately with close family and friends, rather than publicly, will fulfill your need for support and will protect your child’s personal information, too. If your child can’t or does not provide consent, information should be kept private.
Avoid posting photographs of medical hardship online. When considering sharing photos of your child receiving treatments, or in a state of crisis or distress, ask yourself: If someone posted this photo of me, would I approve? Medical moments are trying for children and their parents, but empathy and sympathy for a parent should never come at the expense of a child’s dignity.
Avoid conveying disability as a tragedy. A child’s diagnosis is part of who they are, and the differences that come with it can be celebrated. Your child may experience challenges due to an impairment or lack of universal access. But difficult experiences should not be used to describe or define anyone. Imagine how your child might feel if they knew that you portrayed caring for them as a burden or an overwhelming hardship.
5 Ways to Grow
Embrace disability. It is a valid way of being and a culture with a rich, ongoing history – of challenging the status quo, winning rights and protections, and celebrating differences. Your child is now part of a community committed to ensuring that all are included and have the opportunity to succeed. That’s something to celebrate! Embracing your child’s disability will also play a role in their self-acceptance and identity pride.
Presume competence in everyone, especially your child. There may be times that you wonder if your child understands you or comprehends what is going on in their environment. Believe that they do. Assuming otherwise is incredibly damaging to their sense of identity and self worth. Always believe in your child. Set high expectations.
Advocate for your child, and give them space to advocate for themself. There will be barriers to meeting your child’s needs, and they will come in different forms – in insurance denials and medical treatment plans, in therapy recommendations and educational decisions. Stand firmly in your child’s corner and demand what is deserved, and make sure that your child has the opportunity to advocate for themselves - in doctor’s appointments, school meetings… everywhere.
Amplify disabled voices. People with power and big platforms occupy so much space in the proverbial town square. Make sure the opinions of disabled people are centered. Seek out the perspectives of disabled folx in books, articles, movies and art, and in the social media accounts you follow. Then share them with others.
Keep learning. This post is merely a starting point in your journey of disability awareness. Keep reading. Keep talking. Keep attending panels, webinars and meetings. Learn from disabled folx. Knowledge of disability, and disability rights and advocacy, will help your child reach their goals and their dreams - dreams that you can share and work toward together.
If the ideas expressed in this post are challenging, or bring forth feelings of regret due to past actions, remember that we are always learning. At The Nora Project, we believe that when we know better, we do better. Growing in our understanding and awareness of disability is a journey, and we are here to support you.
The Nora Project resources:
Additional resources:
Podcast: The Accessible Stall
Podcast: Disability Visibility Project
Podcast: Pushing Limits
Podcast: The Rare Life
About the Author: Anitra Rowe Schulte is the parent of a disabled child, the author of inclusive children's books (including Dancing with Daddy, illustrated by Ziyue Chen), and Parent Program Coordinator at The Nora Project. Anitra connects with communities and young readers in author visits across the country. For more information, visit www.anitraroweschulte.com.
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