Sadly, the biggest challenge for someone living with Cerebral Palsy in a family, is how the child with Cerebral Palsy can succeed around those in the family who are able-bodied.
A study carried out by the University of Alberta reported in Developmental Medicine and Child Neurology, 2001, compared adolescents with Cerebral Palsy and their families to those without disabilities. Contrary to some previous literature that portrays families of persons with disabilities as experiencing more negative family relationships, the families in the study demonstrated similar scores in family function and life satisfaction.
The studies authors concluded that while navigating adolescence can be a challenge for a family, the presence of a physical disability does not mean that the experience will be more or less demanding. As my case has shown, the roller coaster effects of dealing with the many ups and downs of Cerebral Palsy can emotionally be difficult and may leave little time or patience for parents to deal with their other children. It depends on how the parents manage to deal with their child’s disability.
Although my parents spent some time taking me to the hospital and physiotherapy appointments, my disability needs at home were never addressed. Emotionally, I struggled to cope and withdrew very early on. With the proper management of my condition within my family, the impact for me could have been managed.
And although I had yearly examinations to make sure my legs were growing properly health care professionals didn’t get involved in my case. Instead I was left to get on with my life but couldn’t because my emotional needs were never met. Sadly, no thought was given to my emotional health and how I was supposed to cope.
My Neurologist has since explained to me that had I not been missed, I may have been made to wear a leg brace and might have been put into a special school for children with disabilities. Of course, that doesn’t make what happened right.
I believe that with any disability, time should also be set aside for other siblings so that their needs are also met. There has to be some form of integration in families, so there is less segregation. Times have changed since I was born.
There is more support now. The physical and emotional needs of children are addressed individually and can be met by those families.