Introduction
Children with neurodevelopmental disorders, such as intellectual disabilities and autism spectrum disorder, can be vulnerable to changes in routines. Unlike school holidays that are known about and can be planned for in advance, the COVID-19 pandemic has resulted in unexpected closures to schools, programs and services. The situation is changing rapidly, and extra planning and support may be needed to help your child to cope with these changes.
Communicate at your child’s developmental level
Use language that is appropriate for your child’s level of understanding to explain what is happening. Share concrete, visual information in the form of:
- Stories: This website has links to several social stories for children about COVID-19
- Cartoons: This cartoon helps children understand about the virus and why their routines have changed
- Websites: Many websites have additional examples of communication resources
For children who are non-vocal communicators (who cannot speak), make sure they have access to their communication system (such as pictures and visual boards, type-to-talk devices, tablet or smart phone AAC apps) to ask questions and express their feelings.
Answer your child’s questions simply and honestly, providing essential, ‘need to know’ information. Let them know you want to make sure everyone is safe and healthy. Try to focus on what will happen today and tomorrow, rather than talking about what will happen in the more distant future.
Acknowledge your child’s feelings, even if they do not express them out loud. Tell them you understand it must be very hard for them right now because they cannot see their friends and teachers, go to the places they like to visit or do many of the things they like to do. Let them know you are going to help them during this time and make positive statements such as “We will get through this together.” Some children may not want to talk about the current situation; they may express their feelings through play or art. Extra time for creative endeavours can help children process their feelings in their own way.
For tips on how to talk to your child about COVID-19, read this article or view this short video.
Help your child to cope and stay calm
Children take their cues from their parents and caregivers. If parents and caregivers are anxious or panicked, children will pick up on this and likely feel the same way. Try to be a positive role model for your child by remaining calm and optimistic without giving false hope and making promises you cannot keep. It is OK to tell children that this is hard for you too and that we all need extra help sometimes. If you are having trouble managing, ask for help from family, friends, and if needed, your health-care provider.
Routine and predictability
Routine and predictability are important for children with neurodevelopmental disorder to feel in control and to make sense of the world around them. Develop a schedule to follow (for links to examples, see the Resource section) and refer to it throughout the day. Some children may prefer you decide what activities are on the schedule. Other children may prefer to have a list of activities they can choose from (use photos of activities for children who don’t read). Some families find that pairing a list of acceptable and desired activities with specific rewards or tokens for completion can give children a sense of control and allow them buy-in while minimizing struggles with parent-enforced transitions. Finding an option that works best for you and your child is key.
Identify calming activities
Make a list of activities that are calming for your child, such as taking a bath or watching a favourite video, and add these to your schedule. For children with autism spectrum disorder, recognize that repetitive activities (e.g., lining up toys, repeating dialogue from a movie) and stereotypic motor movements (e.g., turning in circles) may help them calm down when they are upset. It may also be necessary to build more calming activities into your child’s schedule and give up some academic or other more challenging tasks.
Reduce sensory input
Many children with neurodevelopmental disorder experience sensory overload and can become overwhelmed when the environment is too noisy, too crowded, too bright or there are too many things to look at. If possible, it may be helpful to create a new calming spot for your child that is quieter, dimly lit and has fewer visual distractions (especially if they are now confined to a busy home). This calming spot could be in a room that is not used very often or is away from the noise and activity. If space is limited, try to section off part of a larger room to create a smaller space. For younger children, you can cover a table with a sheet to make a private sitting area or pull a couch away from the wall. Consider offering your child earphones, noise cancelling headphones or eye shades.
Set your child (and your routines) up for success
Identify the best times and most challenging times in the day for your child and plan activities and demands accordingly. If your child is usually better able to handle demands in the mornings, structure learning activities or less preferred tasks during those times. During times when they are feeling tired or bored, different sensory activities can be offered such as deep pressure squeezes, water play, rice bins and light-up toys. Finger painting on windows with children’s paint is also a good activity to try as it can be washed away easily and repeated. There are many suggestions for activities circulating online. If your child needs some time alone, it is a good idea to have a ‘sensory bin’ available for them with items like stress or Koosh balls, slinky toys, spin tops, playdough or modelling clay, and glow sticks.
Set up a reward system for your child
In addition to following a daily schedule, consider reinforcing (rewarding) your child for completing activities and behaving in appropriate ways with a token system. Tokens can be checkmarks, coins, buttons or other items. Once your child has earned all their tokens, they can exchange them for a preferred item such as a snack, toy or screen time. Let them know how much time they have for their preferred activity and then reset the token system. Choose the appropriate number of tokens based on your child’s abilities. Some children work for four or five tokens before getting their reward whereas others can wait longer and work for 10 or 20 tokens. Some children may not be able to grasp a token exchange system and will need an immediate reward to reinforce a desired behaviour. When a token is given, it should not be taken away regardless of what behaviour follows. Your child is earning tokens as a reward for good behaviour. If they engage in problematic behaviours at other times, do what you can to calm them down and then return to the daily schedule and you can give them a token at that point.
Plan daily physical activity
Some children need frequent movement breaks throughout the day. This can be challenging to do indoors, but there are some activities that can be done safely and use up some of that energy. Activities such as jumping jacks, bouncing on yoga balls or a mini trampoline, and even timed races from one side of a room to another are possible, and an adult should be present to supervise. You can move furniture to the centre of the room so that your child can run around it. You can play ‘the floor is lava’ throughout the home by putting down sheets of paper as the ‘rocks’ you are allowed to step on. There are also many children’s workout and yoga videos available online including some with popular characters. If you are not strictly isolating at home, then plan regular hikes or playing in a field or backyard. Avoid public play structures or parks as it may be hard for your child or youth to be told they cannot use the equipment.
Promote good sleep
It is important to promote good sleep during these stressful times. Disrupted sleep can be a sign that your child is having difficulty coping. It can also contribute to behaviour changes in your child.
Strategies to promote good sleep hygiene include:
- Maintaining a regular bedtime routine. Try to keep bedtime and wake up times consistent.
- Creating an environment in your child’s bedroom that encourages sleep. A cooler temperature, dark or dim light, and quiet are ideal. Some children like white noise. If possible, avoid the use of screens (i.e., phone, computer, tablets) in the bedroom, and minimize access to stimulating and preferred toys in the bedroom at night.
- Avoiding certain foods too close to bedtime as they can interfere with sleep. For example, eating large meals, sugar and chocolate too close to bedtime can keep children awake at night.
- Limiting screen time if possible for about an hour before bedtime.
- Encouraging relaxation before bed:
- Encourage quiet activities such as reading (together or independently) or listening to soothing music.
- Practise relaxation techniques such as deep breathing, guided meditation or progressive muscle relaxation. Some children also enjoy receiving a massage.
- Defer ‘worry time’ until the next day. If your child is anxious and asking a lot of questions, reassure them, and try to direct them to talk about it during a set time the next day, but not before bed.
Watch for changes in your child’s behaviour
Be on the lookout for signs your child is becoming more stressed or anxious. This may be new behaviour you have not seen before or existing behaviour that becomes more intense or lasts longer than usual. Examples of behaviours can include pacing, yelling, crying, hitting or throwing objects. Other children may appear more shut down or withdrawn. If possible, try to talk to your child about what may be upsetting them and identify what to do next. This could include providing validation and reassurance, offering to help them with a task they find frustrating, directing them to a quiet space to calm down, checking the schedule to see what is coming up next or offering different activities to choose from (this strategy is known as distraction and redirection). Children who are hungry, fatigued or feel unwell may also show changes in their behaviour, so it is important to identify and address possible sources of pain or discomfort. Be flexible with the daily schedule if it seems to be making behaviours worse.
Use strategies to manage challenging behaviours at home
Ensure a safe environment
Sometimes when children become very upset or distressed, they are unable to control their emotions, and this can result in tantrums or “meltdowns”. During a meltdown, a child may, for example, scream, use angry language, hit others or themselves and throw things around. First and foremost, parents and caregivers need to stay calm. If possible, direct your child to a safe space where the tantrum can run its course while keeping everyone (and the environment) safe. If this is not possible, then try to make the space around your child safe by removing furniture that can be toppled over or objects that could be damaged or thrown. You may need to put down cushions, mats or blankets to protect your child from injury due to falling to the floor. Stand close by to supervise but not so close that you may get hit and be aware of exits to ensure your child does not run away. It can be helpful to have a room (or part of a room) in the home where the environment has been made safe in advance; this could include removing breakable or very heavy objects, securing tall furniture and having available preferred and soothing objects.
Let the meltdown run its course
For many children, tantrum or meltdown behaviours are signs of over-arousal and loss of control. Efforts to negotiate, reason with, punish or “bribe” children during a meltdown often make things worse. Try not to reward tantrum behaviours such as by giving in to previous requests or defaulting to screen time, as it can make tantrums occur more often. Stand nearby quietly, or gently hold or hug your child if that is safer. Occasionally make gentle soothing statements, for example, “I’m here for you when you need me,” or offer a distraction or solution by saying for example, “When you are feeling ready, we can read a book or have a snack.” Avoid complex sentences or detailed explanations or instructions. Most children cannot think rationally during these times and will be unable to respond to even simple demands or suggestions.
Identify common triggers and make a plan
Certain times of the day, particular activities starting or ending, or specific stressors may regularly trigger challenging behaviours for your child. During a calm time, it can be helpful to develop a family strategy to address this (with or without your child’s involvement) in advance. Some children benefit from using behavioural strategies to reinforce desired behaviours (while often ignoring or redirecting undesired behaviours). Some children may need extra direct teaching and practice to learn self-regulation skills.
A behavioural strategy is a plan to improve a specific behaviour that is challenging
Step 1. Pick one behaviour. Select one specific target behaviour to start with (e.g., reduce meltdowns and aggression when the tablet is turned off). It may be tempting to address several behaviours, but it is key to start with one specific behaviour.
Step 2. Make your child part of the team. During a calm period, discuss with your child that you want to help them improve the specific behaviour that you identified in Step 1. For example, you could say “I notice when it is time to turn off your game, things get really difficult for everyone. We are going to try a new plan today when that happens.” As much as possible, try to see your child as a member of the same team; you are working together to improve the target behaviour. If the behaviour occurs in specific situations, do your best to ensure those trigger moments are predictable for your child. For this example, you could say, “From now on, all screens have to be turned off at 12:00 p.m. as everyone has to come for lunch.”
Step 3: Small steps. Break the desired outcome into small steps and start with a reasonable and attainable goal that your child sometimes meets already. For example, a first step could include having your child go to their room for a break for a few minutes to calm down before lunch, using a coping skill such as deep breaths or jumping jacks or keeping their hands gentle and arms down. Maybe your child can help decide what are reasonable steps towards the end goal. This way, they will feel part of the team.
Step 4: Good behaviour deserves a reward. This is a step where your child may be eager to help decide what are reasonable rewards that can be gained for each step. You can consider using a token system so that your child can earn and collect tokens that can later be exchanged for a reward.
Step 5. Give time for transitions. Help your child prepare by giving friendly warnings. For example, with the example above, you should provide a warning at 11:55 a.m., and remind your child once of the new plan.
Step 6. Execute your plan, together. When the plan is in action, wait for things to settle. With the example above, your child may became upset but is able to go to their room and calm down. Congratulate your child for having accomplished, or having attempted to accomplish, the first step towards better dealing with frustration and provide them with a token.
A few ground rules
Do not take away tokens or provide rewards for non-compliance. A good and honest attempt should be rewarded, even if the entire goal was not met.
Be flexible: If your child is not meeting the goal, make the first step smaller and more attainable.
It is best to reward active behaviours (e.g., keeping their hands gentle) as opposed to rewarding them for not doing something (e.g., not hitting).
Follow through with consequences. If some behaviours do merit a clear consequence, this should be separate from their rewards. Autism Speaks Canada has a Challenging Behaviour Toolkit that can be requested.
Know when to seek help
These are especially challenging times, perhaps more so for parents of children with neurodevelopmental disorder. Some or all of the carefully organized supports and routines are discontinued due to the COVID-19 pandemic.
It is common and normal to feel anxious, afraid or irritable under these extreme circumstances. Most importantly, as parents and caregivers, we all need to do our best to be supportive, caring and loving to our children during times of stress.
Pay attention to your own mental health and seek help and care if you need it. Social isolation and high levels of stress can be overwhelming for everyone. It is OK for parents to step away, take breaks and seek help when needed. It may also be helpful to monitor your own screen time and news consumption and try to limit this if you feel it increases your level of stress.
At present, the health-care system is under pressure due to the COVID-19 pandemic. Some of the regular services your child uses may be temporarily unavailable, and access to some crisis services may be restricted. At the same time, new services are being created to provide online support and advice. Service availability and accessibility may continue to change for as long as the pandemic is present. Therefore, it is advised that you reach out to your regular care team (therapist, pediatrician, family doctor, autism or developmental centre), explain the problem you are facing with your child and ask for support. Your regular health-care provider will have the latest information regarding services. Some children may require a new medication or a change in medication to help them get through this time safely at home.
What do if there is a crisis
- It can be helpful to have a ‘crisis plan’ prepared in advance. This can involve identifying coping strategies for parents and children, as well as identifying key supports and individuals, and how to contact them. Letting professional and family support people know in advance that you may be calling on them in a time of crisis can help everyone be prepared.
- If the situation allows, call your regular care team (therapist, pediatrician, family doctor) as they should have the latest information regarding emergency mental health care services.
- Call 911, highlight the mental health or behavioural concern and ask if a mobile crisis team is available to respond instead of the traditional approach. This will not always be possible.
- If you feel that presentation to the emergency department is required, please call them first. Because of COVID-19, there may be restrictions or specific regulations in place that can help protect you and your child against possible contamination (or protect health-care workers and other patients).