Parents of Children with Cerebral Palsy

Original Editor - Roelie Wolting Top Contributors - Michelle Lee, Ines Musabyemariya, Roelie Wolting, Pranay Jindal, Kim Jackson and Chelsea Mclene

Introduction[edit | edit source]

The information on this page has developed for you from the expert work of Roelie Wolting alongside the Enablement Cerebral Palsy Project and Handicap International Group.

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Parents Perspective[edit | edit source]

A mother of a child with a disability writes:
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Colosseum. The Michelangelo’s David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting!!

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After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.“
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Raising a Child with Cerebral Palsy[edit | edit source]

Raising a child who has cerebral palsy creates fresh challenges for the whole family. Research indicates a household with a special needs child is more prone to depression, suicide, financial strain, relationship challenges, divorce, and bankruptcy[1][2]. Others will boast that it can bring relationships together with purpose.
Embracing a life with cerebral palsy requires planning, organisation, perspective, adaptation, and inspiration[3]. For parents, a review of their child’s care plan provides a chronology of choices they’ve made, steps they’ve taken, learning they’ve experienced, and a glimpse at their hopes and dreams for tomorrow; a true source of pride and accomplishment. Many learn how to embrace a life with cerebral palsy somewhere inside the journey itself.

Problems Identified in the Field Possible Beliefs of Parents
  • Do not understand cause
  • They think they have caused it
  • Do not understand how to help
  • Is hopeless or needs medicine
  • Do not play with the child
  • Play is not learning
  • Don't understand the importance of early intervention
  • Think child will get better when growing up
  • Parents loose motivation
  • Expect quick results; Community Based Rehabilitation worker is expert
  • Mother gets told not to do things to help the child; gets negative attitude from family/neighbours
  • Mother feels frustrated because she wants to learn and help but gets discouraged; she thinks it is waste of time
  • Working parents do not have enough time; brothers and sisters do not understand
  • Parents feel guilty; parents think the family will not have enough to eat when they take time for playing

Problems Faced by the Family[edit | edit source]

The family of a child with CP can come across different problems such as :

  • Family does not understand the disability.
  • Difficulty in taking care of the child.
  • Difficulty in teaching the child.
  • Sad feelings about having a disabled child.
  • Financial problems
  • Lack of community support
  • Local organisations do not understand disability
  • Healthcare and rehab system are inaccessible.
  • Local community has negative attitude towards child with disability and their family.
  • To understand the management in Cerebral Palsy and to learn what as parents you can do to help your child, please click on the link 
  • To view videos on ICF in plain langauge please click the link below:

Children with disabilities - growing up[edit | edit source]

Parents with a disabled child are often worried about the future of their child like:

  • Safety, sexual abuse
  • Who takes care of my child when I am not here anymore
  • Employment in the future
  • Who will marry my child?
  • What role can they play in society/church/mosque?

There are many support groups within communities for children and their families who have cerebral palsy. They can be parent associations, or parent support groups, or self help groups. Being a member of a support group can be a huge support for the caregivers.

In low resource places such groups often look for income generation activities for their members as well.

Identify parent groups, disability groups or Disabled People Organisations in your own local area and country.

Refer parents/caregivers to such groups and also as professional work together with these groups.

Parents Experience and Impact of a parent group:[edit | edit source]

In rural Tanzania parents of children with a disability could get a goat in order to improve their economic situation. They had to build their own shed for the goat(s) AND they had to form a parent group in order to help each other with this activity. The parents decided themselves to also ensure that the child with the disability of a group member would be well cared for by the family and if the child was neglected by the family that family could no longer participate in the income generation programme and the goat would be taken away. The result was not only improved economic situation but also empowered parents who tried to find solutions together for their children. As the CBR worker said: "work has become easier for me, because the parents first try to find among themselves solutions for their problems. Before they were member of the group they always asked me to solve the problems of their child. I only now realize how much skills and resources the parents have together"

Organisations supporting Children and Families[edit | edit source]

Here are a few of the different organisations who offer support for children and families:

References[edit | edit source]