Cerebral Palsy & families

The biggest challenge for someone living with cerebral palsy in a family, is how that child can succeed alongside able-bodied family members.

Trying to manage any disability around family life is difficult. As a child growing up with something that didn’t feel right, and later finding out it was cerebral palsy, meant my disability would become part of my family’s life too. I didn’t know how what was wrong with me would affect us all.

A study carried out by the University of Alberta, and reported in Developmental Medicine and Child Neurology, 2001, compared families with adolescents with cerebral palsy to those without disabilities.

Some previous literature has suggested families of persons with disabilities experience more negative family relationships; however, the families in the study demonstrated similar scores in family function and life satisfaction.

The study’s 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.

However, the roller coaster effects of dealing with something like cerebral palsy can be emotionally difficult and may leave little time for parents to deal with their other children. It depends on how the parents manage their child’s disability.

Ensuring that a child with cerebral palsy can flourish alongside able-bodied family members is a big challenge and although my parents spent some time taking me to the hospital and physiotherapy appointments, my mental and emotional needs were sadly

not addressed. As a result, emotionally, I struggled to cope and withdrew very early on. With the proper management of my condition, the impact for me could have been significantly reduced.

Whilst I had yearly examinations to make sure my legs were growing properly, health care professionals didn’t get involved. At the age of fifteen I was told by my consultant there was nothing further they could do for me and was told to get on with my life. I couldn’t because my mental and emotional needs were never met and I didn’t have the tools to cope.

Also, there has to be some form of integration in families. Thankfully times have changed since I was born. There is more support available now and the physical and emotional needs of children are more readily addressed by their families.

Source: https://onlinelibrary.wiley.com


9 Aug, 2017

4 thoughts on “Cerebral Palsy & families

  1. It must be very challenging for any child to live with something like Cerebral Palsy, but at the same time it’s important for a child’s disability to be met.

    It’s any parent’s responsibility to make sure that if they have other children that those children also learn to interact with their sibling with the disability and the child with the disability with his or her siblings and for them to have their own needs met.

    Sadly, it looks as though this didn’t happen for you.

    1. Yes, thank you and I agree. Sadly, as you say it didn’t happen for me, but it’s important all families have the support to help their child with the disability, both emotionally and physically and around his or her siblings too. They tend to be overlooked.

      Without those things in place can make life even more challenging.

  2. With dignity, you’ve carried the weight of Cerebral Palsy with unbelievable awareness. The rest just fell in place with your guidance.

    1. Thanks Tim. Yes, when others don’t help you become aware, you’re often left with no choice.

      When I understood how to connect to my inner thoughts, those thoughts became my guiding light, never leaving my side.

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