Why Tracking Sleep Patterns Can Help Families Living with Kleefstra Syndrome

And how to get started…

Sleep challenges are something many families affected by Kleefstra Syndrome experience. And they can impact everyone in the household!

Things like difficulty falling asleep, frequent waking up during the night, early rising, or changes in sleep patterns over time can all be part of life with KS. Of course, there’s no single solution that works for every child or young person, tracking sleep patterns can be a powerful first step towards better understanding what’s going on with your loved one and what might help them (and the family) get a better night’s rest!

Why does sleep matter so much?

Sleep affects more than just energy levels. Poor or disrupted sleep can influence a host of other things:

• Behaviour and emotional regulation
• Anxiety levels
• Pain and discomfort
• Concentration and learning
• Overall wellbeing for both the individual and their family

When sleep is challenging, it can sometimes feel relentless. Tracking sleep patterns isn’t an instant fix for sleep problems, but it might help families feel more informed and better supported if they then choose to seek help.

How can tracking sleep help?

1. It might help you spot patterns

Writing things down, when they happen, can reveal things that aren’t obvious day to day, such as:

• Waking up at similar times each night
• Sleep being worse after a busy or sensory-heavy day
• Changes during illness, growth spurts or stressful periods

Even small patterns can be useful. And it’s easy to forget wake up times when your own sleep is disrupted and you’re tired too!

2. It supports conversations with professionals

Many families tell us that keeping a sleep diary can be useful if they need to speak to:

• Paediatricians
• Sleep specialists
• Occupational therapists
• GPs or community teams

Having clear information makes it easier to explain what’s happening and this information can support decisions around next steps or referrals.

3. It can reduce uncertainty

When you, and other members of the family are exhausted, it’s easy to feel unsure and start to second-guess yourself.

Tracking sleep can:

• Validate what you’re experiencing
• Help you notice improvements (even teeny tiny small ones)
• Give you a sense of control during what is often a very difficult period

How to get started (let’s keep it simple)

You don’t need and special equipment or apps. Start with whatever feels manageable.

What to note

You could try recording:

• What time your child actually goes to sleep
• How often waking up happens in a night
• Approximate wake up times
• Anything notable (do they seem to be in pain, is it down to illness, is it anxiety, have there been any changes to routines?)

You don’t need perfect accuracy….consistency matters more.

How to record it

This is about finding a method that works best for YOU. That could be:

• A notebook by the bed
• Notes on your phone
• A simple sleep diary template
• A basic app (if that feels helpful)

Or maybe even a combination of everything! Even tracking sleep (or lack of) for one or two weeks can provide useful insight.

If you wanted to explore using an app to make tracking and monitoring easier (or harder depending on how you look at it!), we thought it might be useful to share some apps that we’ve found (there’s no affiliation with these – we just found them and thought we’d share!):

1. Baby Connect – A comprehensive tracker for sleep, feeding, growth, milestones and more, with charts and reports you can share with professionals.
2. Napper – Tracks naps and bedtime routines and offers recommendations based on patterns you record.
3. Huckleberry – Logs sleep (and other daily activities) and offers sleep insights and customised guidance (with optional premium features).
4. Baby Daybook – Includes a sleep tracker that predicts nap and bedtime patterns and helps you spot trends over time.
5. Sleep Cycle Kids – A version of the popular Sleep Cycle app that lets parents track and analyse children’s sleep patterns using guided tools.

A gentle reminder

Sleep challenges do not mean you or something has failed and needing support or guidance is nothing to feel guilty about.

Every child and young person with Kleefstra Syndrome is different. What helps one family may not help another and that’s okay. Tracking sleep isn’t about finding all the answers straight away; it’s about building understanding over time.

REMEMBER! – You’re not alone!

Many families in the KS community face similar challenges, and shared experiences can be incredibly reassuring. If sleep is something you’re currently struggling with, please know that support is available and that small steps can make a HUGE difference

If you haven’t done so already, be sure to follow us on our social channels as quite often our community share stories, ideas and suggestions that might just help. And of course, don’t forget we’ve got the 2026 Family Conference in July. This is the PERFECT opportunity to hear from others who might also have experienced (or still be experiencing) sleep disturbances.

If you have any questions please contact us at info@kleefstrasyndrome.org.