The 5 Things I Wish I Was Told Right After My Child Was Given a Diagnosis
contributions by Jessica Patay, Susanna Peace Lovell, and Dr. Zoe Shaw
It has been 21 years since we received The Diagnosis phone call.
Our pediatrician was very kind to us in his delivery and for that I will be eternally grateful and appreciative. Especially after the many, many stories I have heard from moms in the Brave Community.
It is overwhelming and sometimes even paralyzing to receive a diagnosis on your child. Although it may be a relief to have an answer, we may ask ourselves, “NOW WHAT?” What do I do now? What can someone tell me that will be truly substantive, helpful, or encouraging when I feel so sad I could crawl into bed for days?
My wise and lovely co-hosts from Brave Together Parenting Podcast and I have compiled our thoughts, our emotional and thoughtful reactions to the question:
What do I wish someone told me right after my child was diagnosed with a disability?
We intersect, overlap, and complement each other in our offerings below.
From Jessica Patay:
1. You are not alone. You have so many parents waiting to support you and mentor you and walk beside you.
2. Find community (either in the general disability/medically complex communities and/or in the diagnosis-specific community).
3. Read about and learn the art of practicing self-compassion. Dr. Kristin Neff’s book is a lifeline! (Note: she is a mother to an adult autistic son, too.)
4. Commit to investing in your own mental health and well-being. You deserve it and no one will make this easy for you, but it is imperative. If you are the primary caregiver, you are the most important person in the family.
5. You do not need to buy into martyr-mom philosophies and practices. Learn to ask for help. Exponential motherhood requires exponential support; additional caregiver helpers are a part of that. And… it is possible to find the help you seek.
From Susanna Peace Lovell:
1. Observe/Honor your child for exactly who they are. Take notes! Write down neutral thoughts and information about who your child is, at their core. What brings them joy? What triggers positive and negative behaviors? Get ready to share with professionals.
2. BUILD YOUR TRIBE. (Hell yes. So, so, so important and good.) Start from scratch, and if you need to, start here. Meaning: bless and release the vision that you first had for your child's life and the "family" around them. Lean into the endless opportunities and possibilities with a specific tribe of supporters. I call Arizona’s tribe of support "Team Arizona"!
3. Lean into the knowing that: WHAT IS GOOD FOR YOU is GOOD FOR THE UNIVERSE. YOU FIRST. Always. Non-negotiable. What YOU need changes in every moment. Listen.
4. Lean into the knowing that: EVERYTHING is FOR you. Every circumstance, every situation is for you. This requires getting comfortable with the uncomfortable.
5. Don't constantly apologize or intervene for your child. Let others learn from them. Let your child learn, organically and logically, how to respond to the world around them.
From Dr. Zoe Shaw:
1. Stop reading everything you can get your hands on. Take a break and look at your child and remind yourself that they are the same child they were before you got the diagnosis. Remind yourself regularly.
2. Slow down. You don’t have to do all the things at once. From a mom with a now adult child, this is a marathon, not a sprint. The tortoise wins.
3. Gather your village—news flash, they may not be your family.
4. Get into your own therapy. I know it feels like there is no time for this. You need to be cared for to care for anyone else.
5. Make some cards about your child’s diagnosis to hand out so you don’t have to repeat the explanation over and over again.
We know that this article is not a definitive How-To or a Guide to Social Services to reference for your child’s needs. These things vary from state to state. There are definitely moms in this brave community who are veterans and expert moms who can help provide some insights and specific resources. Please reach out to the community with your questions and we can all continue to be Brave Together.
If you are the mom whose child was JUST DIAGNOSED recently and you are reading these words—please know, you are not alone. You do not need to journey alone, isolated, and worry-wondering.
We are here for you.
Reach out to us anytime: hello@wearebravetogether.org
Join us here: www.wearebravetogether.org. Membership is FREE!
Susanna Peace Lovell received her B.A. from UC Berkeley and is an author, speaker, disability rights advocate and a certified professional life coach dedicated to the health and wellness of disability families everywhere. This is also her lived experience raising a teenage daughter with myriad disabilities and diagnoses including ASD (autism spectrum disorder), ADHD, anxiety and severe food allergies.
Susanna Peace Lovell
Life Coach + Disability Rights Advocate | www.susannapeacelovell.com |
Author, Your True Self Is Enough
Dr. Zoe Shaw is a licensed psychotherapist, author, speaker, podcast host, relationships coach and fitness fanatic. She is passionate about helping women who struggle in difficult relationships, especially that sometimes difficult relationship with themselves, overcome shame and co-dependency.
After 15 years in traditional psychotherapy practice, Dr. Zoe jumped off the couch and now helps women using a different modality with a mix of virtual therapy, coaching services and programs, through a lens of psychology, faith and a dash of feminism.
Dr. Zoe is the author of the Ask Dr. Zoe Column in the Grit and Grace Project women’s magazine and the book A Year Of Self Care. Her upcoming book, Stronger In The Difficult Places will be released by Penguin Randomhouse Waterbrook division in 2025. She has been published in Oprahmag.com, Recovery Today magazine, Forbes and Today.com. She writes about helping women overcome shame and co-dependency.
Dr. Zoe Shaw:
Instagram: @Drzoeshaw and in most social places at the handle DrZoeShaw | https://drzoeshaw.com/
Jessica Patay, founder of We Are Brave Together, is passionate about serving caregiving moms and creating authentic communities. She has always fostered deep, life-giving friendships and has been intentional about her community of girlfriends. As a caregiving mom herself, this passion carries on as she gathers women to encourage them, mentor them, inspire them, and validate their intense and precious journeys.
Her own story as a mom to a child with a disability, began in 2003 when her second son, Ryan, was born and diagnosed with a rare, genetic disorder, called Prader-Willi syndrome. Within two days of receiving this diagnosis, she received a phone call from a mentor mom from the Prader-Willi California Foundation. Immediately she felt relief and comfort knowing she was NOT ALONE.
Jessica Patay has fueled WABT’s growth into an international community of almost 2800 moms. She has helped launch over 25 support groups all over the United States, and in New Zealand and Australia, in the last five years. She is the host of our podcast, “Brave Together Parenting with Jessica Patay”
