Cerebral Palsy (CP) affects nearly one in 400 children born in the UK but nearly a quarter (24%) of people in the UK do not know what the condition is, according to a 2017 survey by JMW.

The reality for many people with CP, and for parents who have a child with the condition, is that this lack of awareness among the general public can make life a real struggle.

Below, two parents, Paul and Meera, share their experiences of navigating the world with each of their children. They explain how the public’s reaction affects them, the impact the condition can have on the whole family, and how the smallest of achievements can bring with it the greatest of joys.

Elsewhere on the JMW Cerebral Palsy Hub, university student and Head Ambassador for CP Teens UK Chloe Tear describes her own experience in a myth-busting article that addresses the common misconceptions of CP.

When times are tough

Meera: “One of the biggest difficulties is finding the space for quality time to spend with the rest of the family - my other children’s needs have to take a back seat. It’s really difficult seeing them being upset and in pain, but not being able to do anything about it.”

Paul: “The worst thing is seeing him in pain if he’s ill or his medication isn't agreeing with him. Screaming solidly for weeks on end... it was really tough to watch. But we all try to deal with it ourselves.”

Dealing with the general public

Meera: “There are a lot of misconceptions and prejudices out there. Arjun gets stared at, and pointed at a lot. In the past he’s been called a ‘naughty boy’, they simply don’t understand it’s part of CP.”

Paul: “Sometimes being treated differently can be a plus, for example, every now and then we can jump queues. But then it flips - we had a barber refusing to cut his hair once because he was uncomfortable doing it.”

Meera: “I don’t want people to feel sorry for me, I just would like people to not judge parents whose children have special needs.”

Appreciating every success

Meera: “The best thing is seeing him achieve what the doctors said he would never do. Seeing him smile, laugh, join in with the rest of the family and different activities. It makes all the difference.”

Paul: “The situation gives you more appreciation of the fact you can just do something when you want to do it. Any smile, giggle or look from Alfie gives a lot of joy. Any achievement he makes is a huge deal - we make the most of everything he can do.”