Health Plus Medical Correspondent
Cerebral Palsy (CP) is an unwelcome global phenomenon. World Cerebral Palsy Day, which occurs annually on October 6, reminds us that there over 17 million people impacted by this disorder. CP is one of the most common physical disabilities affecting the most vulnerable among us, our children. Additionally, CP occurs over the span of a child’s entire lifetime with no cure.
Cerebral palsy (CP) is the most common motor disability in childhood, and children with CP and their families need support.
A Mother’s Story of Challenges
“A decade ago, Keneisha Gopaul, our exceptional cerebral palsy fighter, hurled our family into the unpredictable world of raising a special needs child” shares Paula Hassell-Gopaul. “We love her tenacious spirit, her energy and will pursue any lengths for her care. However, the challenges to access customised teaching and services has always been difficult, especially now as she is older, from a lack of educational institutions, to professionally trained special needs aides, the list is long.”
“Thankfully, the availability of therapeutic services has increased, but accessing such services are only for the few who can afford.” “The slew of weekly occupational, speech, behavioural and physiotherapy visits can easily summate over $5,000 per month. Additionally, the majority of those appointments are during working hours, requiring a parent to be solely dedicated to childcare and go unemployed or constantly requesting leave for appointments.”
“In the public health sector, some relief can be sought, however, the sheer volume of cerebral palsy patients to physiotherapist ratio diminishes the quality of care,” Hassell-Gopaul laments. “As parents we continue to love and parent her with our village, ensuring she continues to sing, dance and be the joyous, boisterous child she is. We make all attempts to offer her a life of inclusion, but more support is needed for these extraordinary children and their parents.” “All we want to do is give the quality of life she deserves, nothing less.”
World Cerebral Palsy Day promotes inclusion
One of the big goals of World Cerebral Palsy Day is to promote more inclusive societies for children with CP. One way to accomplish this is to educate the world on the idea that CP is not some isolated disorder. In many societies, children with CP are either pitied and overprotected or they are regarded with suspicion. Some cultures believe that a mother was cursed for doing something wrong if her child was born with CP. World Cerebral Palsy Day is an opportunity to produce actions that will lead to more open minds and societies.
Three important facts about Cerebral Palsy
1) It mainly affects children
The numbers are chilling. One in four children with CP are unable to talk; one in three can’t walk; one in two have a mental or intellectual disability; and one in four has epilepsy.
2) It affects infants
One in 500 infants is born with cerebral palsy. Almost half of the people with CP were born premature.
3)Cerebral Palsy stigmatizes
In many societies around the world, people with CP are kept uneducated and hidden away from the rest of the community.
Crucial multi stakeholder support can improve the quality of life for children with cerebral palsy before they turn 2.
This support is not prevalent enough and not optimized with several gaps for improvement identified, as published in the report, ‘Enabling Potential for Children with Cerebral Palsy.’ by Action Cerebral Palsy, a UK consortium of specialist charities, The culmination of a parliamentary inquiry into cerebral palsy launched with multiple stakeholders and Action Cerebral Palsy in April 2019. It outlines the findings of the inquiry and identifies policy changes that could help the 30,000 children in the UK with cerebral palsy to achieve their full potential in life. These recommendations can easily be customised to our population here in Trinidad and Tobago, as those gaps also exist.
The report demonstrates that more must be done to support children and young people with cerebral palsy post diagnosis for zero to two-year-olds, when intervention is at its most effective and can transform a child’s life, but also most absent.
Cerebral Palsy and Covid-19 : is my child High Risk?
The Centers for Disease Control and Prevention (CDC) has listed specific conditions considered “High Risk” during this pandemic. One of these is anyone with a neurological or neurodevelopmental condition, which includes cerebral palsy. It also includes epilepsy, a common co-occurring condition with cerebral palsy.
How to Protect Your Child
Anyone who is in a high-risk group is encouraged to stay securely at home. If you have a child with cerebral palsy, they need to stay home with supervision and everyone else in the home should only go out for necessities, like groceries. When outside, stay at least six feet away from others.
When you do come back in the house, wash your hands thoroughly and disinfect anything you’re bringing in. Even while staying in, it’s important to take steps to continue good hygiene: wash hands frequently, avoid touching your face, and disinfect surfaces used often, like doorknobs and light switches.
If you have particular concerns about your child’s health or anyone in the home has coronavirus symptoms; coughing, fever, and shortness of breath, call your doctor. Unless there is an emergency, it’s best to call first and find out what to do next. Also call your child’s doctor before going in for any appointments or treatment. They may be postponed until a safer time.
How School Closures Impact Students with Cerebral Palsy
In addition to the risk to your child’s health, the COVID-19 pandemic is causing a potential special education crisis. Most schools are closed, and your child may fall behind in learning and getting services. Whether your school is offering students online learning during the outbreak or not, your child is likely to fall behind at home. Keep your child safe at home, provide what home education you can, and then fight to get them back on track when this is all over.
Look out for HEALTH PLUS every Tuesday for more informative and healthful articles. If you have any questions or concerns regarding this topic, please email [email protected]