Time to time We are going to share Few of our very heart touching stories during our voluntary CP registry in Pakistan.
When We at Step-Up Pakistan decided to spread awareness about CP in Pakistan , we saw a need to set up a database, it was a huge task and now it seems even bigger than before, but a one little advertisement in a Sunday NEWS paper brought so much response from allover Pakistan that it made our commitment to this cause more stronger.
It is rural or city, educated or un-educated desperation and the helplessness of families with CP or ASD like disabilities is not much different, ...We asked a few basic facts and reached to surprising facts,and common scenarios in these cases ;
- Most kids were born in hospitals or hospital like clinics (instead of an expected at home traditional birth),even in smaller towns.
- Most of the kids faced oxygen deficiency at birth, or cried late.
- Most delayed development was noticed by families within first year of birth.
- Most parents repeatedly consulted doctors, even travelled from their towns to big cities.
- Most families were not given enough information about the condition or the need of intervention and therapy was emphasised.
- None of the families were receiving any social welfare income like Social Security/ Khidmat card, despite their disability.
- Most parents can not give their kids required nutritional supplement, therapy,diapers and struggle for medicine , however they feel ashamed and have too much pride to ask or complain about not getting stipend etc.
- Only parents with more educated back grounds understand their child's condition, however lack of awareness , guidance and system holds them back or make them to think about migration, to developed countries.
- Families which are privileged and educated enough to get information still struggle and usually get disappointed in getting rehabilitative and sincere medical guidance especially if they are in remote towns.
- A simple word like CP is not given to them. These parents are ignored and mislead ,to a level of criminal negligence.
NOTE:It is not about cure and treatment , frustration is due to negligence of medical doctors at the time of birth, or later not intervening when delay happens, irony of the health care situation is cold and criminal, despite a net work of big specialised children hospitals under government, with supposedly free treatment parents have to spend huge amount of money on doctors visits, to specialists and children hospitals, they are not briefed about the condition, need for therapy, or rehabilitative services no suggestions to followup were made, prescriptions are written in English with technical terms which only a medical professional can understand.
When a father of 6 years old boy
with delayed development and an un-diagnosed disability is told his story of struggle in sheer frustration , in this case this poor father was fooled for 5 years , from expensive tests to over the counter tonics were to fix their child who was developmentally delayed since his infancy
- When a father of a 12 years old girl asks for guidance ,
- She cant talk, sit or walk, Her life is limited to a bed, no formal assessment is done, she never had any therapy yet, apparently she understands every thing but never given chance to get education,or speech assessment..... Unfortunately this family lives in a small town of #Sindh which is not much ready for rehabilitative services yet.