Caregiving can be taxing when your child suffers from a neuro-developmental disorder. But, don’t lose hope.
Up to one in five children in India have neuro-developmental disorders (NDD), or indeed, some of their core symptoms: learning disability, childhood epilepsy, cerebral palsy, attention deficit and hyperactivity disorder, autistic spectrum disorder etc.
What is a neuro-developmental disorder?
Conditions that follow abnormal brain development and impact on motor (strength, dexterity, coordination); cognitive (intelligence, learning, aptitude); or emotional & behavioural (mood swings, temper tantrums, socialization issues etc.) function.
How does NDD occur?
While some people have NDD imprinted in their biological code (through genetic, hormonal, and other neuro-biological factors), for many others, the causes lie in critical stages of development. During pregnancy- trauma, drugs, alcohol, smoking, infections, malnutrition etc. Factors affecting the child include birth trauma, infection and neonatal compromise (asphyxia, jaundice, accidents or abuse, infections, malnutrition); untreated epilepsy; other progressive neuro-psychiatric disorders etc.
Who is at risk?
The majority of NDD maybe deemed to be multifactorial- more than one genetic/ biological abnormality being responsible, with strong contributions from environmental events that have impact. In general, having a parent affected by a neuro-psychiatric or developmental condition, may double the risk of NDD. Parental consanguinity also increases the risk.
When should we suspect NDD?
When moderate to severe problems manifest early in children. More challenging are those children who have minimal brain dysfunction. Typically they are slow-learners in school, who find academic progress challenging; may be clumsy and lack dexterity, with poor handwriting; or indeed demonstrate a range of emotional and behavioural patterns.
Why should we take action early?
Children with NDD are often poor performers and/or perceived troublemakers in school. Without adequate help and support, they slide down the educational scale, out of mainstream schooling, into special schooling systems that cannot really tap their potential. Further, children who do not receive support are likely to feel stigmatized and lose their self-confidence.
Where should I take my child, when in doubt?
Your paediatrician should be the first port of call. The class teacher may also have valuable inputs. When either pediatrician or class teacher (or both) suspect a problem, more specialised inputs become necessary.
Learning and intelligence- clinical psychologist
Motor weakness/ other brain disorders (like epilepsy) — neurologist assisted by the occupational therapist
Behaviour — psychiatrist assisted by a counsellor
Language development- ENT doctor supported by speech and language therapists.
In many instances, comprehensive assessment requires a team approach. Depending on the problem a range of laboratory tests may be required-- brain scans, EEG/ electrophysiological tests; blood and urine tests including hormonal assays and so on.
How should I progress once diagnosed?
Your pediatrician should be your primary support. Your child’s school needs to be briefed transparently and kept in the loop. Identify a team of professionals; be consistent in your interactions and regular in follow up. Make sustainable plans and set realistic goals. Prepare for the marathon, not a sprint.
Don’t focus only on the disability; your child may also have special interests and abilities. Focus on them too. Don’t be preoccupied by academic results; focus on overall development.
Caregiving is challenging and tiring; share the care as a family, develop your own support networks with other parents and keep your spirit up.
It’s a long road, but rest assured, there is light at the end of the tunnel.
Keywords: WORLD DISABILITY DAY, neuro-developmental disorders, children with disabilities, earning disability, childhood epilepsy, cerebral palsy, attention deficit and hyperactivity disorder, autistic spectrum disorder