Cerebral Palsy & families

I have talked about lessening the impact for those living with Cerebral Palsy, but the biggest challenge living with someone with Cerebral Palsy in the family is how the child with Cerebral Palsy can succeed around those in the family who are able-bodied.

Apparently 90% of families who have a child that lives with Cerebral Palsy consider the experiences helpful as the  family grow closer, but that doesn’t happen in all families. It is true that the roller coaster effect of dealing with the many ups and downs of Cerebral Palsy can be exhausting emotionally and may leave little time or patience for parents to deal with their other children.

Although my parents spent time taking me to the hospital and physiotherapy appointments, my Cerebral Palsy needs at home were never addressed. Emotionally, I struggled to cope and withdrew very early on. I hid behind my condition, it was easier that way. 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 and neurologically nothing was ever mentioned. 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 physical health or emotional health, apart from my mandatory hospital check ups.

I have since been told by a Neurologist 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. That still doesn’t make what happened to me right. That in some way, I’m supposed be grateful that didn’t happen.

When it comes to Cerebral Palsy, time should also be set aside for other siblings too, so that their needs are also met. There has to be some form of integration in families, so there is less segregation. Those times have changed since I was born.

There is more support now, so the physical and emotional needs of children can be addressed individually and can be met by those families.

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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