Talking to Grandparents and Extended Family About the Diagnosis

💛 Step 1: Start With Compassion, for Yourself and for Them

First, remember: everyone learns and processes at their own pace.

You’ve had time (even if it doesn’t feel like much) to absorb the diagnosis and begin learning about what Down syndrome really means. For your family, this might be brand new. They may still be holding onto outdated ideas or fears that you’ve already begun to move past. That’s okay.

Try to approach the conversation with patience and compassion both for yourself and for them. You don’t need to have all the answers, and you don’t have to manage everyone’s emotions. Your only job is to open the door for understanding. If you’re still feeling raw or emotional (which is completely normal), it’s okay to wait until you’re ready. Or, you can have someone you trust like a partner, friend, or healthcare professional to help you share the news.

💬 Step 2: Choose How You Want to Share the News

Think about what would make you most comfortable. You might prefer to:

• Talk face-to-face with close family members, if that feels right.
• Write a message or email if you need space to express yourself clearly and calmly.
• Share a letter or video that includes both information and your personal feelings.

Here’s an example of what you might say or write:

“We wanted to share that our baby has been diagnosed with Down syndrome. We’re learning a lot about what this means, and while we know there will be challenges, we also know there will be so much joy. We’d love your love, patience, and support as we all learn together.”

This kind of message sets a tone of hope and connection, while leaving space for honest emotions.

🧠 Step 3: Expect a Range of Reactions

Every family member will react differently and that’s okay. Some may cry. Some may ask many questions. Others may say little at all because they don’t know what to say.

You might hear:

• “Will your baby be okay?”
• “What does this mean for their future?”
• “Did the doctors say why?”

It helps to remember that these questions often come from love and concern, not judgment. People ask because they care even if their words aren’t perfect.

You can keep things simple:

“Our baby has Down syndrome. It’s a genetic condition that affects development, but children with Down syndrome can learn, grow, and live happy, fulfilling lives. We’re learning more every day.”

If a comment feels insensitive or uninformed, you can gently correct it later when you feel ready or simply say, “We’re focusing on getting to know our baby and enjoying this time. We’ll share more information as we learn.”

🌿 Step 4: Share Reliable Resources

Family members often want to “help,” but they might not know where to start. One of the best ways to empower them is to share resources that reflect accurate, modern information about Down syndrome.

You could send:

• A link to Small Steps Online, so they can understand how your child’s development will be supported.

We have a great Grandparent's guide in our resource centre Download now

Articles or guides from organizations such as the Down Syndrome Association of your Country (which you can cnnect with using our professonals map) or the Global Down Syndrome Foundation.

Short videos or social stories that highlight real families and children thriving with Down syndrome.

By giving them access to positive, factual information, you help replace fear with understanding and stereotypes with hope.

👵 Helping Grandparents Process the News

Grandparents often experience their own unique mix of emotions — love, protectiveness, guilt, or sadness that their grandchild might face challenges. Some might even blame themselves genetically, even though Down syndrome isn’t anyone’s fault.

Here’s how you can support them while still protecting your own emotional space:

Acknowledge their feelings. Say something like, “I know this might be hard for you to hear. We’re all learning together, and it’s okay to take time to process.”
Invite them to be involved. Encourage them to attend therapy sessions, doctor appointments, or early intervention visits (if you’re comfortable with that). Seeing your child’s progress firsthand can transform fear into pride.

Give them a role. Many grandparents want to do something. Let them read books to your baby, join playtime, or celebrate small milestones. Feeling included helps them shift from worry to connection.

🧩 Step 5: Create a Supportive Family Network

When everyone learns together, your child benefits enormously. You might consider hosting a “family learning day” - an informal gathering where you share what you’ve learned, show therapy activities, or watch a short educational video together. Keep it warm and light-hearted, not formal. Or, you could start a family chat group for updates, milestones, and positive stories — so grandparents and aunts can celebrate your child’s progress alongside you. Encourage relatives to use person-first language (“your child who has Down syndrome,” not “a Down’s child”) and to talk about your child’s strengths as much as their needs. When everyone uses positive, respectful language, it sets the tone for how others — and eventually your child — will see themselves.

💬 Step 6: Be Honest About What You Need

Sometimes the hardest part isn’t sharing the diagnosis — it’s setting boundaries afterward. Family members may mean well, but some might offer too much advice or unintentionally say hurtful things. It’s okay to say: “Thank you for caring — right now we just need time to settle into our new normal.” “We really appreciate support that feels hopeful and practical.” If certain topics are draining, you can redirect: “We’re focusing on celebrating [child’s name]’s progress right now — want to see the new thing they learned?” Protecting your peace doesn’t make you ungrateful; it helps you stay emotionally grounded for your child.

🌈 Step 7: Let Love Lead

In time, most family members will move through their initial emotions and embrace your child completely — often even more deeply than you expect. Many grandparents describe their grandchild with Down syndrome as the “light of the family” or “the one who taught us what really matters.” Relationships may take time to adjust, but love tends to win out — especially when communication stays open, respectful, and full of grace. Remember: you don’t have to convince anyone that your child is worthy of love. Your child is love. All you’re doing is helping others catch up to that truth. 💡 Key Takeaways Everyone processes the diagnosis differently. Be patient with yourself and your family. Choose how and when to share the news — there’s no “right” way. Provide reliable, positive resources to replace fear with understanding. Include grandparents and relatives in your child’s journey so they feel connected. Set boundaries when you need to protect your emotional space. Lead with love and openness — over time, your family will reflect that love back tenfold. You Don’t Have to Do This Alone If your family needs help understanding Down syndrome or learning how to support your child, Small Steps Online can help. Our resources guide families through early development with evidence-based strategies, practical support, and encouragement for every stage. Your child’s story is still being written — and by bringing your family along on this journey, you’re creating a circle of love that will help your little one flourish every step of the way. 💛