Some days you’re holding everything together. Other days, you’re just trying to make it to bedtime.
If you’ve ever felt exhausted by meltdowns, aggression, or constant resistance, you’re not alone. Over 93% of families report weekly behaviour concerns in individuals with Down Syndrome. These challenging behaviours aren’t a reflection of your caregiving — they’re signals that something deeper is going on.
This post is based on insights shared at the 2025 NDSC Convention during the INCLUDE Project presentation, Evidence‑Based Solutions for Challenging Behaviors and Developmental Concerns in Children with Down Syndrome. It brings you practical, research-informed strategies from leading experts.
Why Do Challenging Behaviours Happen?
Behaviour is communication. For teens and adults with Down Syndrome, challenging behaviours often stem from:
- Frustration with communication
Limited expressive language can make it hard to share needs or feelings. - Executive function challenges
As Dr. Deborah Fidler explained, skills like planning, flexibility, and impulse control are harder for people with Down Syndrome, making transitions and changes stressful. - Medical or sensory issues
Sleep problems, pain, or sensory overload can trigger behaviours. - Co-occurring conditions
According to Dr. Anna Esbensen, ADHD is 20–44% more common in individuals with Down Syndrome, and autism occurs in up to 1 in 5. These can amplify behaviour challenges.
Step 1: Look for the “Why” Behind the Behaviour
Before jumping to solutions, pause and ask:
- Is my loved one tired, hungry, or in pain?
- Is the environment overwhelming (noise, crowds, bright lights)?
- Is the task too hard or unclear?
Tip: Keep a simple behaviour log for a week. Note what happened before, during, and after the behaviour. Patterns often emerge.
👉 Download the Printable Behaviour Log Template
Step 2: Use Predictability as Your Superpower
Transitions and surprises can be tough. Try:
- Visual schedules for daily routines.
- Countdowns before switching activities (“Five more minutes, then dinner”).
- Clear expectations (“First homework, then favourite show”).
Small tweaks like these reduce anxiety and give your loved one a sense of control.
Step 3: Build Skills Through Play and Practice
Research shows that executive function skills — like flexibility and working memory — can improve with targeted activities. Dr. Fidler’s EXPO program focuses on playful ways to build these skills. Examples:
- Sorting games (by colour, size, or category).
- Simple “switch” games (change rules mid-game to practice flexibility).
- Memory card games.
These don’t need to be long or perfect. Even 5 – 10 minutes a day can help.
Step 4: Address Co-Occurring Conditions
If you suspect ADHD or autism, trust your gut. Dr. Marie Moore Channell emphasized that autism is more common in persons with Down Syndrome than most people think — and getting an evaluation can unlock access to therapies and strategies that make life easier for everyone.
Step 5: Calming Scripts for Meltdowns
When a meltdown hits, your brain might freeze. Here are simple, caregiver-friendly phrases you can use to help your loved one feel safe and supported:
1. Acknowledge the Feeling
- “I see you’re upset. It’s okay to feel that way.”
- “You’re safe. I’m right here.”
2. Offer Comfort Without Pressure
- “Let’s take a break together.”
- “We don’t have to do this right now.”
3. Give a Simple Choice
- “Do you want to sit on the couch or go to your room?”
- “Should we listen to music or have quiet time?”
4. Use Predictable Language
- “First calm, then we’ll talk.”
- “We’ll start again when you’re ready.”
Bonus Tip: Keep your tone calm and steady. Your voice is the anchor when everything feels stormy.
Step 6: Give Yourself Permission to Step Back
You’re not failing. You’re navigating a complex reality with love and persistence.
When things feel overwhelming:
- Take a short break (even two minutes to breathe).
- Reach out to a support group or friend.
- Remind yourself: You’re doing enough.
Final Thoughts
Challenging behaviours aren’t about “bad behaviour.” They’re about unmet needs, stress, and skill gaps. With small, consistent steps — predictability, skill‑building, and medical checks — you can reduce the intensity and frequency of these behaviours.
As you try these strategies, remember to be gentle with yourself.
Take what helps from these strategies, leave what doesn’t. You’re doing more than you know.
If you’re feeling overwhelmed or just need a moment to breathe, the Caregiver Reset Kit is here for you. It’s a free, gentle resource designed to help you pause, regroup, and feel supported on the hard days. You can download it now if you need it.
