Challenges of raising CP child

Today i would like to talk about the challenges of raising a child with cerebral palsy who needs specialized care. In my two and a half journey with my son Elly, i would honestly say that it is very expensive to raise a special needs child. 

The moment a child is diagnosed with CP, the religious journey to the occupational and physical therapists begin, This has to be consistent and only the parent to the child can manage this, it is not easy to get a reliable nanny or family member to do this, For this reason most parents are forced to quit their jobs and careers and concentrate on the child, who also in most cases will fully depend on the parent almost all their life. Friends and family will sometimes turn their back on you cos to some this feels like a burden, and to friends the social life dies being that all attention goes to the affected child. 

When Elly was  diagnosed with CP at four months old, i had not much knowledge on children disabilities in general. There was no counselling given to me on what was to come. Lack of counselling facilities for CP parents is a major cause of denial as most parents do not understand their children's condition.

Stigma should have been top on my list, In Kenya in general, disabilities are still seen as a form of punishment or sins from the parents. The general public has no knowledge of CP and in most cases the public stares and asks annoying questions, this makes some parents to hide their kids, denying them their social life. Most marriages are broken and in most cases the mothers have to bear the burden of  raising the affected kids and other kids if any. The myths and superstitions surrounding disabilities in kenya makes it difficult for parents to fit in the society, they are judged and isolated.

As i have mentioned above, it is very expensive to raise a child who needs specialized care. The cost of therapies and treatment is very expensive and no insurance company in Kenya has a cover for children with CP. Any assistive  (sitting aids, wheel chairs, standing aids) and orthopedic  device that these kids need are also very expensive. Traveling with thesse kids is also very expensive. 

Poverty and lack of enough finances is a major challenge too, some families cannot even afford a decent meal, and at the same time they are raising a CP child who need a balanced died to survive. 

These are just but a few challenges, there are amny more that i will be sharing now and then. 

Thank you for reading my blog, please share as we continue the journey of Understanding CP. 

#love

#awareness

#cerebralpalsy

What is Cerebral Palsy

And what exactly is Cerebral palsy? This is one question am often asked whenever i post or talk about Elly having CP. I will briefly try to explain and please keep in mind that CP is a condition not a disease.

Cerebral palsy is a term used to describe a non-progressive neurological disorder that affects a person’s movements and posture caused by abnormal development, or damage to motor control centers of the brain. It mostly occurs before, during or after birth .The abnormalities of muscle control that define CP are often accompanied by other neurological and physical abnormalities. CP is not a specific diagnosis, but is more accurately considered a description of a broad but defined group of neurological and physical problems.

People with cerebral palsy may have problems swallowing and commonly have eye muscle imbalance, in which the eyes don't focus on the same object. People with cerebral palsy also may suffer reduced range of motion at various joints of their bodies due to muscle stiffness. 
 Cerebral palsy's effect on functional abilities varies greatly. Some affected people can walk while others can't. Some people show normal or near-normal intellectual capacity, but others may have intellectual disabilities. Epilepsy, blindness or deafness also may be present.

There is no cure for CP, however, supportive treatments, medications and surgery may help many individuals. This may include physical therapy, occupational therapy and speech therapy. There are also some medications that may help relax stiff muscles. Often, external braces and other assistive technology are helpful.

Some affected children can achieve near normal adult lives with appropriate treatment.

Welcome to my blog

My name is Rose A Angira, the mother of Elly, a 2.5 year old boy with cerebral palsy.
Elly's condition has inspired me to create awareness and to help fight stigma surrounding disabilities.
In this blog i will not only share my journey with Elly, but i will also write about the information on children disabilities, the causes, challenges, stories from other parents like me and more. I realized most people do not have knowledge about disabilities, and that is one of the big causes of stigma.
I believe that when once people understand, they will learn to accept and show love to the special needs children.

Hopefully my blog stories will in one way or the other encourage someone somewhere who is still living in denial.

welcome again!


Rose