March is Developmental Disabilities Awareness month. Recent news reports in the media has called our attention to a sad fact; as the world moves forward with the advancement of high tech gadgetry and even tele medicine, the number of those with disability both in Sri Lanka and elsewhere in the world are conversely on the increase due to various factors; disease, viruses, injuries, accidents. Sadly, it is children including very young children who seem to be among the majority of victims of such disabilities. Many of them are either born with development impairments or are children who in the first years of their life develop various disabilities that affect their day today normal functions and development such as Autism and other disorders- all of which affect a child’s growth and cognition.
To get more understanding on this health issue which has received little attention till now, the Sunday Observer spoke to Head of Rehabilitation Services , MJF Charitable Foundation. Dr Gopi Kitnasamy who has long experience in treating children with developmental disabilities.
What exactly are developmental disabilities (especially in children) and when do they actually start, the Sunday Observer asked.
Replying to our question he said, “Developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas. These are conditions starting during the first years of life and affecting the developing brain. Most developmental disabilities begin before a baby is born, but some can happen after birth because of injury, infection, or other factors. These conditions which usually begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime.”
Risk factors
To Medi Snip’s query as to what the common causes and risk factors that lead to such disabilities are, he said, “Most developmental disabilities are thought to be caused by a complex mix of factors. These factors include genetics, parental health and behaviors (such as smoking and drinking) during pregnancy, complications during birth, infections the mother might have during pregnancy or the baby might have at very early in life and exposure of the mother or child to high levels of environmental toxins, such as lead. But for most of these conditions, we don’t know the exact cause.“
When asked to spell out specific examples, he mentioned, disabilities such as cerebral palsy, autism, muscular dystrophy, Down syndrome, or fetal alcohol spectrum disorder as affecting a person’s growth and/or cognition.
When questioned as to why it was important to identify and initiate intervention at a very early stage of the onset of the disease, he said, early identification and intervention have a significant impact on a child’s ability to learn new skills, adding that Developmental Milestones give a general idea of the changes to expect as a child gets older.
Development Milestones
When asked to explain what these milestones are, he said, “Milestones are behavioural or physical checkpoints in children’s development as they grow. These are the core skills infants and toddlers should be reaching. milestones mark the month most babies start a certain behaviour, skill or ability based on baby’s age, but exact timing will vary. All children are different and they develop at their own pace, but most children reach developmental milestones at or about the same age. It’s difficult to tell exactly when a child will learn a given skill. However, the developmental milestones give a general idea of the changes to expect as a child gets older. Skills such as sitting on their own, crawling, taking a first step, smiling and playing with other children are called developmental milestones. Children reach milestones in how they play, learn, speak, behave, and move (rolling, sitting, standing, crawling and walking). They can be divided into motor, sensory, communication, feeding, cognitive, social and emotional milestones. They offer very important clues about the child’s developmental health and must be achieved at typical ages. Not reaching milestones or reaching them much later than children the same age can be the earliest indication that a child may have a developmental delay.”
Early clues to look out for
Asked which of them were among the most important in an infant he said, “ The most important ones to be monitored are ability to hold the head up by 3-5 months, smiling at you, sucking/drinking and swallowing well, sitting independently by 6-9 months, standing by 10-12 months, walking by 12-15 months, making eye contact, playing/using both hands, reaching out for toys, responding to sound/voice, making sounds.”
Reiterating on the importance of monitoring these Development milestones, he said, “Early identification and intervention can have a significant impact on a child’s ability to learn new skills, as well as reduce the need for costly interventions over time. Early identification enables timely early intervention when the greatest gains are possible from neuroplasticity. It hastens the onset of therapy and treatment, ultimately minimizing resultant impairments, preserving cognitive function, and allowing time for the child and parents to adjust .”
He urged parents to seek medical advice from a professional at the first indication that their baby was not developing according to what was typical in an infant, to identify and initiate intervention. “The most important reason for monitoring each child’s development is to determine whether a child’s development is on track. Any problems noticed during developmental monitoring should be followed up with developmental screening. Developmental screening is a short test to tell if a child is learning basic skills when he or she should, or if there are delays, “ he emphasised.
New disability App to help parents
To a question as to where parents and guardians could obtain such facilities and what the MJF Charitable Foundation which he represented had done to facilitate such services to parents of disabled children across the country, he said, “ During the Covid-19 lockdown, we introduced disABILITY Screening App which is a tele-screening and tele-therapy platform. The App aims to share knowledge, therapies and services for people with disability especially children in regions of Sri Lanka where access to transport, regular therapy and other services are limited. The app includes guided developmental screening for early identification and intervention, allowing caregivers to monitor progress with the guidance from MJF Charitable Foundation’s multidisciplinary rehabilitation team. ” Asked to give more details on how it operated, he said that the screening questions were designed from 0-3 months to the age of 5 years and parents and guardians were guided by pictures, videos and sounds making it easy for families to understand and give their responses. ” Once the screening questions are answered and completed, the MJFCF’s team will be in touch with the families for further assessments and necessary interventions, he said..”
So where is the App available ? Was it free? We asked. His reply was that it was available for both android & I-phones and is available free to download on the Google Play and App Stores. The families can also use our online platform www.disability.lk or contact our hotline 0777 116 116 to receive these services., he added.
Advice to parents of children with disabilities
To our final question on advice to all parents out there desperately looking for alternative solutions to help them in their 24 hour plus job in this post Covid era, he said, “ As a parent, you know your child best. If your child is not meeting the milestones for his or her age, or if you think there could be a problem with the way your child plays, learns, speaks, acts, or moves, talk to your child’s doctor and share your concerns. Don’t wait or delay seeing your child’s doctor. Children who don’t reach milestones may need extra support and services to reach their full potential. Acting early can make a real difference. “