The simple act of taking a different route to school can trigger a crisis. The cancellation of a planned activity turns into a catastrophe. The slightest change in the usual flow of the day generates anxiety, resistance, sometimes emotional breakdown. If you are a parent of a child with Down syndrome, these scenarios are probably familiar to you.
This need for routine and this difficulty facing the unexpected are not whims. They reflect a particular cognitive functioning and real needs for predictability. Understanding these mechanisms will allow you to more effectively support your child through life's inevitable changes.
Why Routines Are So Important
The Security of Predictability
For all human beings, predictability is a source of security. Knowing what will happen allows us to prepare, anticipate, and feel in control. Uncertainty, on the contrary, generates stress and anxiety.
In children with Down syndrome, this need for predictability is often amplified. The world can be perceived as particularly complex and difficult to decode. New situations require significant adaptive effort. Routines offer a stable and reassuring framework within this complexity.
When each day follows a familiar pattern, the child knows what to expect. They can anticipate events, prepare mentally, mobilize appropriate resources. This predictability reduces cognitive load and frees up energy for learning and interactions.
The Role of Procedural Memory
Routines rely on procedural memory, this form of memory that stores learned sequences of actions. Brushing teeth, getting dressed, packing a backpack: these daily activities gradually become automatic, no longer requiring conscious attention to be executed.
In people with Down syndrome, procedural memory is often relatively preserved, unlike other forms of memory that may be more fragile. This means that well-established routines can be executed with competence, even when other aspects of cognitive functioning are more difficult.
This relative strength of procedural memory explains why routines are so valuable. They allow the child to function effectively in areas where they might otherwise be in difficulty.
Reducing Cognitive Load
Each decision, each adaptation, each response to a new situation consumes cognitive resources. When routines are in place, many everyday situations no longer require active decision-making: one simply does things "as usual."
This reduction in cognitive load is particularly important for children whose cognitive resources are limited or tire quickly. The fewer decisions to make and adaptations to do, the more energy remains for other aspects of the day.
Conversely, when routines are disrupted, everything becomes new again and requires effort. The child must analyze the situation, decide what to do, adapt to the unknown. This additional cognitive load can quickly exhaust resources and lead to crisis.
What Happens When Routine Is Disrupted
The Broken Mental Schema
When your child wakes up in the morning, they probably have a mental schema of the day ahead. This schema may be more or less detailed depending on the child's abilities, but it exists: a representation of what will happen, in what order, with which people.
This mental schema allows the child to project themselves, know what to expect, and prepare. It is a tool for anticipation and regulation.
When a change occurs, this mental schema no longer corresponds to reality. The child finds themselves with an obsolete representation, facing a situation they had not anticipated. They must quickly reconstruct a new representation, adjust their expectations, and mentally reorganize.
This reorganization requires significant cognitive effort. And if resources are insufficient to do this adaptation work, anxiety and distress take over.
The Anxiety of the Unknown
The routine change introduces uncertainty. And uncertainty is anxiety-provoking. "What's going to happen now?", "What will it be like?", "Will I know what to do?"
This anxiety can be all the more intense because the child has difficulty asking questions, obtaining information, and understanding the explanations given to them. They find themselves facing the unknown without the linguistic tools to reduce this uncertainty.
Anxiety itself consumes cognitive and emotional resources. An anxious child is less available to adapt, which further increases the difficulty facing change. It's a vicious circle.
The Loss of Control
Routines give a sense of control. The child knows what will happen, they can anticipate, they master the flow of the day. This sense of control is reassuring and empowering.
When routine is disrupted, this sense of control disappears. The child finds themselves passive, subjected to events they did not choose and may not understand. This loss of control can be experienced as threatening.
The crisis can then be understood as an attempt to regain control. By refusing, protesting, and opposing, the child tries to resist what is imposed on them and restore the normal course of things.
The Most Difficult Types of Changes
Sudden and Unprepared Changes
Changes that occur without warning are generally the most difficult to manage. The child has not had time to prepare, adjust their mental schema, or mobilize their adaptive resources.
An appointment cancelled at the last minute, an unexpected change of program, an activity that must be interrupted for an unexpected reason: these situations leave the child helpless, without the reference points they had constructed.
Surprise amplifies the difficulty. The child is caught off guard, which can trigger an intense and immediate stress reaction.
Cancellations and Absences
Paradoxically, the cancellation of an activity can be more difficult than adding an activity. The child had prepared for something that ultimately will not happen. They had created expectations, anticipated the pleasure, and all of that collapses.
Disappointment is added to the disruption of the mental schema. The child must not only adapt to the change, but also manage the frustration of not having what they expected.
Moreover, cancellation creates a "void" in the day. What will happen instead? The uncertainty is double: the loss of the planned activity and the unknown of what will replace it.
Environmental Changes
Changes that affect the physical environment can be particularly disturbing. A move, a room change, furniture rearrangement, or a trip modify the child's spatial reference points.
The familiar environment is an anchor. One knows where things are, how to move around, what the secure spaces are. When this environment changes, everything must be relearned.
Vacations and trips, although pleasant in theory, accumulate difficulties: change of environment, change of routine, change of temporal reference points. They can be exhausting for the child and require special preparation.
Changes in People
The absence of a usual person or the presence of a new person can also disrupt the routine. The child had integrated certain people into their mental schema, and their change destabilizes this schema.
A substitute teacher, an unusual babysitter, the absence of a parent: these situations modify expected interactions and can generate anxiety, especially if the child has difficulty establishing new relationships.
> DYNSEO supports you: Our training Facilitating Daily Autonomy for Children with Down Syndrome: Routines and Visual Tools teaches you to build solid routines and prepare changes effectively. You will discover visual tools that help your child anticipate and better experience modifications to their daily life.
Preparing Changes in Advance
The Importance of Anticipation
The best way to reduce the impact of a change is to prepare it in advance. The more time the child has to integrate the information, adjust their mental schema, and prepare emotionally, the easier the change will be to experience.
The preparation time depends on the magnitude of the change and the child's abilities. A small change (taking a different route) may require a few minutes' notice. A major change (moving, changing schools) may require weeks or months of gradual preparation.
Anticipation is not limited to announcing the change. It involves helping the child concretely envision what will happen, to create a new mental schema that integrates the change.
Visual Supports for Preparation
Visual supports are valuable tools for preparing changes. They make abstract concepts concrete and allow the child to "see" the change before it happens.
The visual calendar allows showing when the change will take place. Days can be crossed off as they pass, which helps the child visualize the time remaining before the event.
Photos or drawings of the new place, the new person, or the new situation allow the child to familiarize themselves visually with what awaits them.
Visual sequences showing the progression of the change (first we do this, then that, then that) give a predictable framework within the change itself.
Social stories, these small illustrated narratives that describe a situation, can explain the change and reassure about its progression.
Language to Explain
Accompany visual supports with verbal explanations adapted to your child's level of understanding. Use simple, concrete language, and avoid ambiguous formulations.
Describe what will happen in concrete terms: where, when, with whom, what, how long. The more precise the information, the less room there is for anxiety-provoking uncertainty.
Answer the child's questions, even if they seem repetitive to you. Repetition is often a sign that the child needs reassurance and seeks to consolidate their understanding.
Avoid formulations that maintain uncertainty: "We'll see," "Maybe," "It depends." These responses, which may seem reassuring to an adult (because they leave options open), are anxiety-provoking for a child who needs to know.
Visiting New Places
When possible, a preliminary visit to the new place can considerably facilitate adaptation. The child can explore the environment, identify spaces, and get used to sensations (noises, smells, lights) without the pressure of the actual situation.
Before a new school, visit the premises with the child. Before a trip, show photos or videos of the destination. Before a medical appointment in a new place, pass by the building or enter the reception hall.
These preliminary exposures transform the unknown into semi-known, which significantly reduces anxiety.
Managing Unexpected Changes
When the Unexpected Occurs
Despite all preparation efforts, there will be unexpected changes. Life is unpredictable by nature, and it is not possible (nor desirable) to control everything.
Faced with an unexpected change, your reaction as a parent is decisive. If you panic, you transmit an alarm message to your child. If you remain calm and confident, you show them that the situation is manageable.
Announce the change clearly and directly. Avoid long preambles or complicated justifications. "There's a change: we're not going to the pool today, we'll do something else instead."
Proposing an Alternative
When a change involves canceling something, proposing an alternative can help. The child has something instead of the "void" created by the cancellation.
This alternative should ideally be something pleasant or interesting for the child. "We can't go to the park because of the rain, but we can make cookies at home."
The alternative offers a new mental schema to construct, which is easier than managing a void.
Validating the Difficulty
Acknowledge that the change is difficult for your child. "I know you wanted to go to the pool and that it's disappointing." This validation doesn't solve the problem, but it shows the child that you understand what they're experiencing.
Avoid minimizing ("It's not a big deal") or rationalizing ("We'll go another time, it's not the end of the world"). These well-intentioned responses can give the child the impression that their feelings are not legitimate.
Validation doesn't mean giving in or changing the decision. It simply means acknowledging the emotion while maintaining the reality of the change.
Giving Time
Adapting to change takes time. The child needs to process information, adjust expectations, and regulate emotion. This process cannot be artificially accelerated.
Avoid rushing the child toward the new situation. "Come on, it's fine, let's go, hurry up." This type of pressure adds stress to existing stress.
If possible, allow a transition time between announcing the change and starting the new situation. These few minutes can make the difference between successful adaptation and a crisis.
Building Flexibility Gradually
The Long-Term Goal
The need for routine is real and must be respected. But the long-term goal is to help your child develop a certain flexibility, an ability to adapt to life's inevitable changes.
This flexibility is not acquired by forcing the child to undergo changes without preparation. It is built gradually, through positive experiences of successful adaptation.
Each time your child goes through a change without a major crisis, their confidence in their adaptive capacity grows. These successes accumulate and build resilience to future changes.
Small Voluntary Changes
Deliberately introducing small controlled changes in daily life can help develop flexibility. The idea is to expose the child to minor variations, in a secure context, so they learn that change can be manageable.
Slightly modify a routine while preparing for it: "Today, we're going to put on shoes before the coat, instead of the reverse." The change is small, prepared, and occurs within a globally stable framework.
Offer choices that introduce variability: "Do you want us to take this path or that one?" The child experiences a variation they themselves chose.
Celebrate successful adaptations: "You see, we did things differently and everything went well!" These positive reinforcements encourage flexibility.
Developing Coping Strategies
Help your child develop strategies they can use when facing changes. These strategies can include:
Deep breathing to manage change-related anxiety.
A transitional object (stuffed animal, blanket, familiar object) that brings a sense of continuity in the midst of change.
Reassuring phrases ("It's going to be okay," "Mom will come back later") that can be repeated like mantras.
A transition routine (song, gesture, ritual) that marks the passage from one situation to another.
These strategies, practiced outside crisis moments, become resources that can be mobilized when change occurs.
> DYNSEO supports you: Our training Helping Your Child with Down Syndrome Manage Their Emotions offers you strategies to develop your child's emotional flexibility. You will learn to gradually guide them toward better tolerance of changes.
Special Contexts
Vacations and Travel
Vacations, supposed to be a time of pleasure, can be a major challenge for a child attached to their routines. The change of environment, time zone, unusual activities, different proximity: everything is disrupted.
Prepare intensively for vacations. Show photos of the place, explain the program day by day, bring familiar objects, maintain certain routine elements as much as possible (meal times, bedtime rituals).
Plan recovery times during vacations. Days filled with visits and activities can exhaust the child. Alternate with calmer and more predictable moments.
Accept that the first days of vacation may be difficult, while the child adapts. Things will generally improve over the days.
School Transitions
Changing class, school, or grade level represents a major upheaval. New environment, new teachers, new classmates, new expectations: everything changes at once.
Start preparation several months in advance. Visit the new place, meet the new teachers if possible, talk regularly about what will change and what will stay the same.
Identify elements of continuity that can transcend the change: a friend who will be in the same class, an object that will accompany the child, a routine that can be maintained.
Plan for a longer adaptation time than normal. The child may need several weeks, or even several months, to fully acclimate to their new situation.
Family Changes
Family life events (birth of a sibling, separation, moving, bereavement) are major changes that affect all of the child's reference points.
These situations require particularly careful preparation and prolonged support. The child may have intense emotional reactions not only at the time of change, but also in the weeks and months that follow.
Don't hesitate to seek help from professionals (psychologists, educators) to support your child through these major transitions.
Key Takeaways
The need for routine in children with Down syndrome is not a whim but a cognitive functioning that provides security and efficiency. Routines reduce cognitive load and allow the child to function better.
Routine changes disrupt the child's mental schema and generate anxiety and loss of control. Sudden changes, cancellations, and environmental modifications are particularly difficult.
Preparation is the key to facilitating changes. Anticipation, visual supports, clear explanations, and preliminary visits allow the child to adapt more easily.
Faced with unexpected changes, your calm, validation of emotion, and time allowed for adaptation are essential.
The long-term goal is to gradually develop your child's flexibility, through positive experiences of successful adaptation and acquisition of change management strategies.
DYNSEO, Your Partner in Supporting Down Syndrome
At DYNSEO, we understand the importance of routines and the difficulty of changes for children with Down syndrome. Our training gives you the tools to create a structured daily life and support transitions.
Discover our training:- Facilitating Daily Autonomy for Children with Down Syndrome: Routines and Visual Tools: Build effective routines and prepare changes with adapted supports.
- Helping Your Child with Down Syndrome Manage Their Emotions: Develop emotional flexibility and coping strategies.
- Managing Difficult Behaviors of a Child with Down Syndrome: Understand and support reactions to changes.
Together, let's create a more predictable and more peaceful daily life.
This article was written as part of the DYNSEO blog, dedicated to healthy aging, memory, education, and supporting people with cognitive disorders.
