Growing up with cerebral palsy

For people with CP, as it is for everyone, managing both physical and mental health is important for living a happy, healthy life. As we age, it’s not uncommon to face more health issues that may need help from medical professionals to manage to ensure we live an as comfortable life as possible. 

Recently, one of our community members, Thea, reached out to share her story. Thea is an adult with CP, and shares how managing both her physical and mental health is important for her overall well-being, especially in recent years. 

Emotional well-being is just as important as physical well-being

With hindsight, it is evident that what was lacking in the 1960s, was an awareness that maybe my emotional self also needed tending to with counselling, along with all the therapies that were assisting me to ‘be and do anything I want.’

Once I stopped attending the Spastic Centre and school at 16, I was empowered by personal choice. I chose to stop doing my daily stretching exercises. I chose to do nothing to help with my mobility and movement. I was determined to ‘fit in’ and doing ‘special exercises’ would mean that I was different. And this was unacceptable to me.

Fast forward 42 years (2 marriages and 3 children later). During my 30’s, I took myself on an emotional journey, and sought assistance by counsellors and psychologists for my depression, anxiety, and deep shame I had about my body. 27 years ago, I gained the courage to allow myself and talents to come out of hiding and carved a career as a family and relationship counsellor.

Becoming older and changing health needs

During my 40’s, I was indeed an independent being.  A single parent, managing the daily grind of keeping a home with three teens, whilst creating a successful career in counselling. At around 45, I succumbed to the pain that I was feeling in my body (that had been there for years) and sought out physiotherapy. The physiotherapist nearly fell off her chair when I told her that I had cerebral palsy but hadn’t sought out any physical therapy since about 16.

This certainly isn’t something to boast about (I say with absolute hindsight). My reason for not seeking out physical therapy for all these years was that I simply became the individual that my parents were advised to make me all those years ago. An independent person who could do anything abled-bodied people could do. And acknowledging the pain in my body, and seeking assistance for it, did not fit into this picture.

I am now 58 and I have noticed quite a decline in my mobility and balance. I am still working in a career I love, however every month, I note another thing that I am physically unable to do. I do wonder if I hadn’t had a 29-year gap between physiotherapy appointments if this deterioration would have been a lot slower. This I will not know. But what I do know is that a lot of ‘physical work’ was done to me when I was a child aptly labelled as early intervention. However, in my case, I discounted the ongoing benefits of physical therapy after the age of 16, because my emotional state was not acknowledged or listened to. Ironically, my self-loathing, coupled with my fiery need to be independent and the same as everyone else, ruled out many of the benefits of early intervention!

As I navigate NDIS to see what assistance I may be eligible for as I age, I note that in 2023, there is still so much emphasis on therapies that physically assist the child to be independent. There are of course many more psychological services available to children with disabilities than back when I was a child, however, it still feels a bit like ‘what can we DO to this child to improve their life’, rather than really seeing the child, and placing equal value on their feelings and vulnerability as an integral part of their growth and development.

People who like themselves make healthy choices for themselves – that’s not rocket science. I know that I would have made a bunch of different decisions for myself if I had liked who I was. And maybe I could have avoided a lot of pain and hardship, and maybe I would be in better physical shape now. Hindsight is a wonderful thing……. but it has taught me that there is little point in attending to the ‘doing’ therapies if you ignore the being of a person.

Thea offers counselling services for people with CP and their families. You can visit her website to find out more www.theakeanecounselling.com.au 

If you are looking for resources to help you manage your physical or mental health, you can find a range of different information here. As we get older, our needs change, so to find the information most relevant to your current life stage, simply follow these steps:

• Select the information category you are interested in
• Click the “Life Stages” button
• Select the relevant life stage for you
• Click “Apply”

You’ll then be able to browse the resources relevant to your selected life stage.