By Wasim Kakroo
DESPITE the challenges, most people have adjusted their lives to follow ever changing guidelines related to COVID-19, which include self-isolation, social distancing, and the wearing of face masks. However, for children with various types of intellectual and developmental disabilities as well as for their parents, these daily requirements and inconsistencies of the pandemic are extremely challenging. Children with intellectual disability, moderate to severe developmental delay, autism spectrum disorder, muscular dystrophy or brain disorders like cerebral palsy are likely to have the same risk factors as the general public, however due to relatively weaker immune system they are more susceptible to the COVID-19 infection, according to the Centers for Disease Control and Prevention.
Children with disabilities can find it difficult to remain confined in enclosed spaces without any social interaction, and it can lead to them feeling irritated, fidgety, and showing aggressive behaviour, among other things. As a result, their parents might be going through a really difficult time. The difficulty is further exacerbated by the fact that the stress that their children would feel earlier before COVID-19 pandemic that was shared among parents, schools, and vocational training centres must now be handled solely by their parents or guardians. Their inadequate and poorly understood means of expression, as well as their poor comprehension, makes it difficult for parents to convey the seriousness of the situation caused by the pandemic. It also becomes difficult for their parents/caregivers to alleviate their anxieties and/or behavioural issues caused by disrupted routines and their frequent desire to leave their homes.
While working from home to keep a job, or living with no job for a daily wage worker, performing all household tasks and observing all the standards of sanitization and at the same time attending to their child’s various disabilities puts any parent on an emotional overload with almost no breathing space.
COVID-19 and the ensuing lockdown can cause children with disabilities to experience a variety of difficulties as a result of the drastic changes and resulting stress. As a result, parents and guardians of these children must be prepared to manage and direct their children during the pandemic so that both such children as well as their parents/caregivers feel less stressed and more competent to deal with the challenges created by the pandemic in their lives.
Following are the general guidelines for parents and caregivers of children with special needs:
- Cleanliness of Children: After the outbreak of the COVID-19 pandemic, hand sanitisation has become the standard, whether by washing with soap and water or rubbing with alcohol-based solvents. Sanitation can seem to be a simple task, but it is rarely so, particularly for children with developmental disabilities or behavioural issues. The value of this aspect is further underscored by children’s natural propensity to touch surfaces and handle objects without any regard for hygiene. As a result, it is important that they be taught how to properly and frequently sanitise their hands. This training should meet the government-recommended protocol for handwashing, which is to wash hands with soap and water for around 20 seconds. The fact that children with disabilities tend to have a weak immune system multiplies the risk and makes them more vulnerable to various infections. As a result, extra caution should be exercised in keeping their bodies clean. Children should be taught to cover their nose and mouth with a clean towel while sneezing and coughing. Parents should keep their children away from strangers or visitors from other countries. Since the corona virus can spread from person to person, it’s a good idea to teach kids to keep at least two meter away from everyone they might communicate with. This, in turn, would prevent the virus from spreading through droplets produced when an individual coughs or sneezes. The majority of children with disabilities have trouble following directions and learning from their experiences. Since most children are good at imitating, their parents should model acceptable behaviour for them, and the children should be encouraged to replicate it. Caregivers of such children must remember that their instructions may need to be repeated many times.
- Eating habits and health of children: Almost all parents find it difficult to get their children to eat nutritious foods on a regular basis, however, this task can be even more difficult while dealing with children with various disabilities owing to increased rigidity, sensory problems, behavioural issues etc.
Here are five ways to assist your child with disability to begin eating and exploring healthier food choices:
- Improve your own eating habits: One of the most effective ways to inspire your child to eat a balanced diet is to set a good example for them. It would be difficult to expect your child to choose to eat better if you eat unhealthy foods on a regular basis. Discuss each food and the nutrients it contains the next time you sit down with your child for a nutritious meal.
- Work together with your kids in the kitchen: Cooking is a valuable skill because it promotes language development and independence. When it comes to cooking, there are many language concepts to focus on, including sequencing, following instructions, and expanding vocabulary, among others. Allowing your child to cook with you allows them to add their own touch to their food, increasing the probability that they will consume it.
- Try to eat at the same time every day: This is necessary for children with disabilities, as it can give a structure to their daily meal times, but you can allow them some flexibility. E.g., lunch will be served between 12:30 and 1:00 p.m.
- Interrupt your child’s activities every now and then to praise them for good behaviour. This is especially relevant for children who have been disruptive and demanding while the meal is being prepared.
- Constant snacking and nibbling on fast food should be avoided at all costs.
- Children’s exercise routine: In these trying times, when we’ve been confined to our homes for weeks, our everyday tasks have been reduced to eating and cleaning. The resulting significant lack of exercise can be harmful to our health. This lack of exercise in children with disabilities may result in a rapid increase in body mass and the loss of previously learned skills. The World Health Organization (WHO) recommends that children exercise for at least an hour per day. It may be any type of workout, such as playing video games, yoga, or stair climbing. Exercises for children should be tailored to their physical disabilities. Before exposing their children to new activities and techniques, parents should seek advice from their consultant occupational therapist/physiotherapist.
- Sleep: A sufficient amount of sleep is critical for children. While adults are recommended 8 hours of sleep per night, children should get 10-11 hours per night to be well rested. Children with developmental disabilities, such as autism, are known to have a high incidence of sleeping problems. Trouble falling asleep, regular waking up in the middle of the night, and difficulty waking up in the morning are all examples of sleep problems found in children with disabilities.
Following is the list of simple strategies that might help your child get a good night’s rest:
- Create a reliable, regular bedtime routine: Establish a regular bedtime routine by various positive reinforcements. If this schedule is not well established, it would be difficult for children with intellectual disabilities to re-adjust to the routine following the reopening of schools or vocational teaching centres.
- Schedule energizing activities to morning time: Jumping, roughhousing, tickling, and screen time are only a few of the things that kids with developmental disabilities enjoy. Although these activities are enjoyable and provide sensory feedback and exercise, they also make it difficult to sleep. To help them have a sound sleep, try more relaxing things like puzzles, listening to slow music, deep pressure and massaging, breathing or yoga exercises, reading or listening to old favorite stories etc. in the evening and especially around the bed time.
- Think Positively: All people benefit from positivity, regardless of age, situation, or disability. Before bedtime, boost your child’s morale by going through all the positive aspects of their day. Save a difficult conversation about their behavior for the next day, and instead focus on the positive actions of the day. Extra praise should be given to the child for healthy sleeping habits. Let your child understand exactly why they are being praised so that they can repeat the behavior in the future. Use unique compliments like “You slept all night!” or “You stayed in your bed all night.”
- Medicines: Thyroid and epilepsy are common medical disorders that accompany developmental disabilities, congenital disabilities, and congenital heart diseases. For this, primary health centres should be consulted, or general medications should be purchased from the nearest medical store. It is important to take medications continuously for conditions such as schizophrenia and mood disorders. Breaking a medication’s course without consulting a doctor can result in more complications. Thus it is advised that for parents to have enough stockpile of medicines on hand during the lockdown.
- Learning new skills: This pandemic and the ensuing lockdown, has given us enough time and this time can be used by parents/caregivers to teach new skills. A good portion of each day can be devoted to train children about various new skills. Brushing, combing, wearing shoes and tying shoelaces, colouring, gardening, and hand and leg washing, for example, could be taught to children if enough time was set aside each day. Regular online contact with the therapist must be maintained if the child is being assisted by a behaviour therapist, physiotherapist, occupational therapist, speech therapist, or special educator. Internet-based materials may also be used to teach the children various skills.
- Responsibilities/duties: Some people believe that children with disabilities should not be entrusted with household chores. It’s important to remember, however, that the responsibilities you give them and the work they do can help in moulding them and helping them build their own identities. Smaller roles and duties may be delegated to them at first. For example, they can be assigned the tasks responsibly such as gathering the newspaper in the morning and putting it in the appropriate location; folding clothing, and watering the plants; keeping their belongings safe and clean; and cleaning the dining tables after dinner. This will help them in developing a sense of accountability. Small roles may be assigned to children in each of the tasks performed by elders, which would boost the child’s trust and aid them in the development of identity.
- Entertainment: The lockdown may also be seen as a time to have some fun. It’s beneficial to hear stories and watch videos. Television, computer games, and YouTube videos have all been part of the disabled population’s daily routine. A schedule can be made for this by allocating one hour per day to watch these. Continuous watching programmes over screens can have a detrimental effect as it can lower the cognitive abilities of the child acquired up to that point. Child’s entertainment activities should also include various board games and other games in which parents and siblings of the child may take an active part thereby reducing the possibility of technology addiction.
- Behavioral problems: In a situation where it is necessary to isolate oneself, everyone has a tendency to feel disturbed and enraged. In the case of children with disabilities, this may be more intense. So, in order to resolve this issue, we must focus more on the activities and tasks to do. When children perform desired tasks, they can be praised, and the activity can be videotaped and shown to them later so that they understand what behaviors are expected of them and confidence could be built up using it. It is important not to provoke them unnecessarily.
- Emotional problems: Children with intellectual disabilities often lack some emotional intelligence related skills. Although they have a hard time recognising their own and others’ abilities, feelings, and behaviours, yet they have the potential to imitate. So, they could be trained and many of the requisite skills could be learned by them through imitation. Children with learning disabilities or difficulties can experience emotional issues as a result of their disabilities, so their strengths must be identified and nurtured appropriately. Children who lack emotional intelligence are more likely to suffer from depression and anxiety. To minimise it, the chances of them being left alone must be decreased, while the chances of them interacting with family members must be increased. Anxiety and fear are at an all-time high in these unpredictable times. If the lockdown situation worsens and the child begins to exhibit different problems with relation to their emotions, online programmes and tele-counselling should be used as such problems if left unaddressed may turn into something more difficult to manage.
- Psychological, physiological and emotional wellbeing of caregivers: Studies show that primary care for children with disabilities is mostly offered by their mother or a motherly figure in many households. Ideally, all responsible adults in the household should share this burden. If you have a partner at home, make an agreement to share childcare responsibilities. Working together will keep your entire family occupied and ensure that no one person (Mother) is overburdened. Family support can have a positive effect on children’s overall development. Primary caregivers should look after their families, but they should not neglect their own well-being and happiness. Caregivers should participate in activities that promote their own well-being and relaxation, such as listening to music, reading a book, or even participating in physical activities or indoor sports. They should keep their support network strong, even if they can only call or text friends and family. Socializing is essential for regulating your mood and maintaining your sense of self-awareness. Email, video chatting, and social media are all options for interacting with others and seeking help. If negative feelings become overwhelming, it is important to seek help from a mental health professional in your area or through online resources (teletherapy/teleconsultation). Sleep patterns should be checked, and a routine should be formed and followed. It is very likely that we would experience physiological and psychological discomfort if we are quarantined for an extended period of time. This is a good time to reconnect with yourself and your family, as well as focus on improving your relationships. Take this opportunity to spend time with your family, to appreciate the beauty of nature by electronic means, to tell your children bedtime stories, and to sing forgotten lullabies. All of these activities will leave you with beautiful memories to reminisce about. Finally, note that being kind to yourself will not only help you remain calm through this trying period, but it will also ensure that you have the strength you need to take care of your disabled children and the rest of your family. Together, we shall overcome this.
Views expressed in the article are the author’s own responsibility and are not a substitute for medical advice
- The author is a Consultant Clinical Psychologist at IMHANS and can be reached at [email protected]
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