Dan, dad to Elisa, describes the complicated web of services, support, diagnosis, and complications he has to navigate as a parent carer. What would your child’s mind map look like?
Our daughter’s condition is complex.
She has Cerebral Palsy (CP), but that on its own isn’t everything. That is simply the first part of her diagnosis. Even CP has several different classifications depending on the severity, the type and the area of the body affected. Our daughter has dystonic\dyskinetic Cerebral Palsy Gross Motor Function Classification System Level 5. This explains the effect of her brain damage on her movements only. With all brain injuries there are other complications, other considerations.
The attached mind map is me trying to make some sense out of the chaos. Trying to show information in a simple and easy to understand manner, so anyone can look and understand the maelstrom that circles our daughter’s life.
These are all things that should, when working properly, provide her with a basic level of comfort and stability in life. They are all things that we manage as her parents, beyond just being her parents. Each relies on numerous other people, some that have known her since birth and some who have been recently introduced to her care. For the new people this mind map is something we have to explain to them, something that we have to go through again and again. That in itself is exhausting and emotional.
For a child without a disability the map might include, play, siblings, extended family, going to events, taking part in day-to-day activities. Joining sports clubs, holidays and day trips. For us we have to consider everything on the map before we can even dream, let alone think, about doing these things.
It is also something that those who are not a parent carer should look at and try to unpick. Our daughter’s condition is complex, her life is complex and as parent carers we have to deal with this complexity every day.
What would your child’s mind map look like?
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