I was 13 when I first came across the term ‘neurodevelopmental disorders’ while working as a mental health advocate. Back then, I knew nothing about the topic. Having a network of wonderful friends, some of whom actually had some neurodevelopmental or neuromotor conditions, gave me access to lots of experience-based and thoroughly researched information & useful resources. Also, I could understand the experiences of people, mainly teens, who have faced neuromotor disorders on some levels.
Neurodevelopmental disorders include a wide array of cognitive, functional, and motor impairments. The National Centre for Biotechnology Information, USA defines neurodevelopmental disorders as “multifaceted conditions characterized by impairments in cognition, communication, behavior and/or motor skills resulting from unusual brain development.” Out of these, the disorders that particularly affect one’s movements, posture, muscle tone, and motor abilities are known as neuromotor disorders. These can be static in nature or progressive, i.e., worsen as a child grows. The unusual brain development may occur due to damage to the immature brain, i.e., the brain during the age of 0 to 4.
Neuromotor disorders again are many in number, though commonly they include cerebral palsy (the most commonly occurring), amyotrophic lateral sclerosis, Spina Bifida, etc. These disorders lead to issues with gross motor skills and fine motor skills, causing ‘delayed milestones’. Delayed milestones are when a child does not reach the expected stage of development at a particular age. Apart from the neuromotor disorders, some cognitive neurodevelopmental disorders like autism and ADHD also cause delayed milestones, and often issues with fine motor skills, as well.
As these conditions usually occur due to damaged functioning of the brain, many tend to associate them with mental instability. This prevents many from getting their kids diagnosed with neuromotor disorders, especially if they show up at finer levels of motor action. Also, the ignorance towards symptoms usually comes from the assumption that they would fade away as the child grows up, and brushing the symptoms off as “quirks” or “weirdness”, “clumsy child thing” and such. This notion becomes specifically harmful if the child has a progressive neuromotor disorder (It worsens as the child grows).
As Dr. Sumedha Harshey – an experienced pediatric physiotherapist and neurodevelopmental therapist from a locality in Maharashtra provides her insights, the delay caused by this ignorance in providing the child needed treatment and therapy often ends up creating difficulties in the child’s recovery. It’s best to start the treatments before the age of 5 when the brain is in its developing stage helping the child learn movements and exercises from therapy and cope with surgeries if any are performed, but ignorance towards the symptoms prevents this.
As Dr. Harshey further says, “the panic arising within parents’ minds after getting the child diagnosed with a neuromotor disorder is a huge obstacle in the affected receiving proper treatment. The parents are often overwhelmed with the number of diagnosing tests they’re suggested by doctors for their child. Out of panic, sometimes the parents may resort to alternative treatments such as massages or acupressure without any medical recommendation, etc.”
This is certainly NOT okay as this may worsen the situation even more as the increased blood flow around the muscles may in turn increase tightness of muscles or cause joint inflammation.
It’s evident that one of the biggest reasons behind people’s reluctance to accept their children ‘s neuromotor disability is the societal notion of associating mental retardation with neuromotor disorders. Whereas, in reality, most of the children struggling with neuromotor disorders are definitely able to live an almost near-normal life if they get the needed treatments, therapy, and counseling in time. Of course, depending on the disorder or the circumstances, some cases of neuromotor disorders may show some extent of mental retardation or intellectual disabilities. But generalizing associating mental retardation with neuromotor disorders is extremely harmful, and has a significant impact on the child’s mental health as well, causing them to struggle with self-esteem, social skills, communication, and anxiety.
It becomes essential that the people need to be educated and made more aware of the neuromotor disorders. Along with the parents or caretakers of the affected children, others also need to understand the importance of creating an inclusive space for children with neuromotor disorders. This can only be possible if people have access to proper resources and guidance about neuromotor disorders. People being educated and aware of the neuromotor disorders and the way they may manifest, can help reduce the judgemental perceptions around delayed milestones, motor skill issues, and the need for therapies to recover. Reducing stigma and misconceptions around neuromotor disorders can help better to bring children struggling with neuromotor disorders into the mainstream.
About the Author
Gargi Bhavsar is a 15 year old from Maharashtra, India. She loves reading, writing and speaking . She works as a climate and mental health advocate. Eco-anxiety is one of her topics of concern.
She’s a Girl Up Changemaker, a volunteer at External Affairs Secretary of Project EIM and also work closely with Malala Fund.