Google can be a terrifying place. Just seeing what comes up when you put the words “Cerebral Palsy” into the search engine can make you feel like your whole world is crumbling around you. Immediate questions start swirling around your head: “what is this?”, “what’s the treatment?” and “will my child walk and talk?”
In this blog post, we explore answers to these three questions many parents ask when their child is first diagnosed with Cerebral Palsy and direct you to parent-friendly websites or organizations to find out more information about Cerebral Palsy (CP).
What Is CP?
CP happens when there is an injury to the developing brain (a brain that is less than two years old). This injury does not get worse over time, but it is permanent. The brain is a complicated “control room” for the body that controls movements and postures of the body. The brain injury causes muscles (in a person’s legs, arms, trunk, face or eyes) to work differently. While this is the defining characteristic of CP, CP can also be associated with other difficulties such as seizures (epilepsy), sensory system difficulties, learning difficulties, visual difficulties and communication difficulties.
All children with CP are different from each other depending on where and how much of the brain was injured. Some children have CP in their whole body, some children have CP on one side of their body and some children have CP in their legs. Some children’s muscles are too tight all the time, some children’s muscles are too “floppy”, some children move too much all the time, some children struggle with balance and coordination of movements and some children’s muscles move a lot but then get stuck in positions. Chat with your team about what CP your child has.
Parent-friendly websites to learn more about Cerebral Palsy include:
- Kids health: https://kidshealth.org/en/parents/cerebral-palsy.html
- Malamulele Onward: You can register and receive hand-outs (available in numerous South African languages) https://cpchildren.org/online-resources
What’s the Treatment?
CP is a condition that is managed by a team to help your child to unlock their full potential and to participate to the best of their abilities in all life situations. This team includes:
- Your child.
- Family- parents, siblings, grandparents, aunts, uncles, cousins, second cousins twice removed…
- Friends- new, old, twice removed…
- The medical team (Appointments with this team may be in public hospitals, private facilities or non-profit organizations close to you or far from you depending on where you live. The best approach is the most sustainable approach for you and your family. Sometimes this is regular appointments and sometimes this can be “blocks” of appointments). The medical team includes:
- Paediatrician and Paediatric neurologist who makes the diagnosis, manage associated complications (such as treatment of epilepsy) and manage your child’s overall health.
- Nursing team to monitor your child’s growth and administer immunisations.
- A dietician who ensures that your child receives the nutrition they need for them (and their brains) to grow.
- Therapy team: Occupational Therapist (who helps your child’s sensory system, daily activities, fine motor skills, seating…), Speech Therapist (who helps your child’s feeding skills and communication skills), Physiotherapist (who helps with ways to manage your child’s tone and with gross motor skills), Music Therapist (who assists your child’s socio-emotional development such as enhancing their interaction skills).
- Other members of the team may also include behavioural optometrists, orthotists, psychologists, play therapists, social workers or orthopaedic surgeons.
- School team. This includes teams at preschools (standard preschool or a special crèche that can cater to your child’s needs), schools (standard schools, full-service schools or special schools) and other centres.
This team’s composition and the team’s goals vary because every child with Cerebral Palsy is different. But the common framework used for the management of all children with Cerebral Palsy is the World Health Organization’s International Classification of Functioning, Disability and Health. A parent-friendly website to explain the management of CP is https://canchild.ca/en/the-icf-for-parents-p-icf. In these parent-friendly videos, all the different components of the ICF are explained using examples of children with CP.
Will My Child Be Able To Walk and Talk?
This is the most common question parents ask and the most difficult question to answer. All children with CP are different so it is best to discuss this with your child’s team.
There are many ways to get between two points and many ways to communicate (which is the transfer of information between the sender and receiver of a message).
- Some of the ways that people with CP get between two points include getting pushed in a wheelchair, using a wheelchair by themselves, walking with assistance (such as using a rollator) and walking on their own.
- Some of the ways that people with CP communicate include crying, behaviour, making sounds, moving their bodies in a specific way, pointing, gesturing, pointing to pictures on a board (or a tablet) and talking.
- Having a child with CP can be costly. The following may be useful to know:
- You may be eligible for a Care Dependency grant based on a mean’s test (https://www.sassa.gov.za/Pages/Care-Dependency-Grant.aspx)
- You may be able to reclaim some expenses with SARS (https://www.sars.gov.za/TaxTypes/PIT/Pages/Tax-and-Disability.aspx)
- If you are with a medical aid scheme, you may be able to apply for PMBs (Prescribed Minimum Benefits) (https://www.medicalschemes.com/medical_schemes_pmb/). This is a separate “pocket of funds” where medication (for example, for epilepsy) and therapy (for Cerebral Palsy) can be applied for that does not come out of medical savings.
- CP affects the whole family. Brothers and sisters of a child with CP and parents of a child with CP are vulnerable, stressed and often unintentionally overlooked. The below article tips for families:
- There are some amazing South African organizations doing cool things! Here are some of the websites (but they are often more active on social media forums or via email). Each child is unique, and they may need very different things to help them participate in life situations, so the below list is by no means “prescriptive” and please chat with your team as to what is the best option for your child:
- Assistive devices:
- The Meyer Beukes warriors on wheels Foundation
- Through medical aids/out of pocket payments, the following websites have equipment options: https://shonaquip.co.za/, https://sitwell.co.za/, http://www.cemobility.co.za/
- Training for caregivers of children with CP (such as parents, caretakers or extended family):
- There are some super inspiring people out there and some are living life with CP too:
You’ve made it to the end of this blog post. Thank you for the time in reading this. I sincerely wish you and your family all the best. Let’s start the conversation: share your story and your journey with CP and share organizations/websites that you know about to help other families.