Supporting Someone Whose Child Has Received a Special Needs Diagnosis
Hearing your friend or a family member has received the unexpected news their child has arrived with a medical diagnosis can feel overwhelming. Knowing the right thing to say and do in a time like this often feels impossible. We had a wide variety of experiences with our friends and family as they tried to support us while dealing with their own emotions. Below, I share what our friends and family did right and how you can help.
Follow the Ring Theory
Imagine there are two circles. One circle within a larger one. The people who received the news about their child are in the center of this circle. You, as the friend or family member, are in the outside rings. The first thing you need to understand, the inside circle “dumps” out; not the other way around.
Often when people mean to help, they end up “dumping” their emotions on the people who are actually living the experience. An example of this: “ Rory was born with down syndrome, we are scared and trying to navigate this time. Response: “This just makes me so sad, friend says while crying, how did this happen? I can’t wrap my mind around it.” My response: “I’m sorry. It will be ok. These things happen.” Don’t put the hurting parent in the position of needing to comfort you, when you need to be making them feel secure and comforted. They don’t have the capacity to carry the extra burden of your emotions.
Use the Right Words
As a friend or family member of a child with special needs, you can show your caring and commitment through the words you use in everyday conversation.
Follow the parents’ lead in the words you use when talking about a diagnosis, and always seek to use “child first” language. For example, Rory is a child who has Downs’ Syndrome. She is NOT a “Downs Syndrome Baby.”
Most important, say "we."
I’ll never forget the words one dear friend of mine, in particular, used when I shared the news of Rory’s diagnosis with her:
“We love her.”
“We will be there for you.”
With that one small word, I could sense that my friend was truly in this with me. Knowing that we would walk this road together was like a soothing balm to an open wound in those early days.
Don’t Pressure Them to Move Forward
Understand, they will process these feelings in their own time. You can gently prompt them to share their feelings along the way—yet if they don’t openly respond, know you have planted a seed. They may linger in certain spots along the grief cycle a little longer than others. Show them grace and remember that everything they knew about their future has changed.
Be a Consistent Presence
Don’t go MIA. Everything feels different about their life, losing friends or not hearing from them in the same frequency contributes to the loss of normalcy. These changes also bring validation to some of the biggest fears.
1. Their new family is not accepted by you.
2. People blame them for their child’s diagnosis.
Remember to Talk About the Everyday Stuff
They are thinking about this news all day, every day. They are talking about at Dr's appointments, while verbally processing the news or sharing information with others. Following their lead, try to bring some normalcy to the conversation. Talk about the news, normal new baby things or something fun they hope to do in the coming months.
Show Up With Practical Help
Bring them food. Help them with any siblings. Clean their house. Know what their needs are. When Rory was born she had two small holes in her heart, which made it hard for her to gain weight. People would keep buying clothing for her, but she wasn’t growing. Those outfits caused me a lot of emotional pain, they reminded me what she would be if she didn’t have down syndrome. Keep things like this in mind when you buy gifts for families during this time.
If you or a family member have received a T21 diagnosis click this link to download our “Navigating a Down Syndrome Diagnosis” guide. I wrote it in the weeks following my daughter's diagnosis.