The more I read about Cerebral Palsy, the more I am disillusioned by the lack of support and necessary preparations that could have helped me grow up with the condition that I didn’t know I had.
Although my medical problems as a child weren’t complex in comparison to other children with Cerebral Palsy, it is clear the way my condition was handled, fell very short of the mark. It is important for any child born with Cerebral Palsy to have access to all treatments, resources, services and supports, required, just to be able to thrive in the world.
Managing Cerebral Palsy is the minimum factor that secures the basics for a child with Cerebral Palsy, to be able to cope inside and outside of the home. Security, stability, health, education, family, shelter and sustenance, provide the basic physiologic human needs for a child with special needs.
Below is a list that helps manage Cerebral Palsy:
- A care plan must be put in place as soon as a Cerebral Palsy diagnosis has been made;
- An Individual Education Plan must be set up and be prepared and for the parents to become their child’s advocate for any educational support they need;
- Cerebral Palsy doesn’t just concern the Cerebral Palsy child. The whole family is affected, therefore it’s important the condition is addressed with all family members in mind. If handled correctly, the family should come to terms with and be okay with everything;
- It’s important to make sure all appointments for hospital visits are planned and in the diary;
- It’s important for the family to bond, therefore opportunities must be made to make sure that happens;
- Cerebral Palsy isn’t just a physical problem. It’s important to emotionally continue to help your child;
- Informed choices must be made about community support options;
- A therapy timetable must be incorporated and daily reinforced at home in a conciliatory way so that your child is emotionally supported;
- Dealing with any medical condition takes time and adjustment for all the family. To cope, it’s important to talk about your child’s condition to a family friend or counsellor. Anyone who is happy to listen and won’t stand in judgment;
- Include proper nutrition, sleep and exercise as part of your daily routine;
- Accept that dealing with a child with Cerebral Palsy means you may need help from time to time;
- Looking after a child with Cerebral Palsy takes time and energy. Slow down so that you’re able to cope with all of the demands the condition brings;
- Finally, the financial strain on families with a child with special needs is vast. It’s important to make sure a health insurance plan is in place to help with medical expenses.
Although my hospital and physical therapy appointments were met and exercises were incorporated into my daily routine, that’s where the rest of these similarities end.