Explaining DTDS to Siblings, Classmates, and Teachers
Back-to-school season is exciting for every family—but it can also bring new challenges for children with rare diseases like Dopamine Transporter Deficiency Syndrome. Many parents ask us: How do I explain DTDS to siblings, classmates, and teachers in a way that’s clear, kind, and age-appropriate?
Here are some strategies to help:
1. Keep It Simple
For younger children, you don’t need to get into all the medical details. A short explanation works best:
“DTDS makes his body move differently and sometimes he needs special equipment to help him.”
“Her brain doesn’t always send messages to her body the way yours does.”
This frames DTDS as just one part of who the child is—without making it feel scary or confusing.
2. Highlight Similarities
Kids understand friendship through shared experiences. Remind them that their sibling or classmate still likes stories, songs, toys, or games.
“She might use a tablet or eye gaze device to talk, but she still loves to tell jokes.”
“He may eat through a tube, but he still enjoys mealtime with his family.”
This helps children see past differences and focus on connection.
3. Give Classmates Practical Tips
Classmates want to know how to include their friend. Teachers can share ideas like:
Ask before helping (kids with DTDS may have equipment like wheelchairs).
Look at them when talking, even if they answer using a device.
Be patient if it takes longer to respond.
These small reminders help classmates feel confident including children with DTDS in everyday activities.
4. Support Siblings
Brothers and sisters often carry extra responsibility or big feelings. Encourage open conversations at home:
Let them ask questions without judgment.
Make sure they have their own time with parents.
Remind them that their sibling’s condition is nobody’s fault.
When siblings feel seen, they become some of the best advocates and allies.
5. Equip Teachers with Resources
Teachers are eager to support—but they may not have heard of DTDS before. Share simple resources like:
A one-page “All About Me” handout (with medical needs, communication preferences, and tips for inclusion).
Links to the DTDS Foundation website for background information.
Direct contact information for the family in case of questions.
The more confident teachers feel, the smoother the school year will be.
6. Lead with Strengths
Whether talking to siblings, classmates, or teachers, always start with what the child can do and what makes them special. Their diagnosis is only part of their story.
Final Thought
Every conversation about DTDS is a chance to build understanding, empathy, and inclusion. When classmates learn how to connect, siblings feel supported, and teachers have the tools they need—our children can thrive both inside and outside the classroom.