I am going to write about some important but difficult topics in the next few days. Topics we do not like discussing and most people push to the back of their minds with the words, I will think about it later. Well, let me help you voice it out so that you can think about it now.
What happens to the special needs child when the main caregiver is either incapacitated by sickness or dies?
Is there anyone among your family, friends, neighbours, etc. that knows how to care for your child?
Is there anyone you have told about your plans for your child?
Do you even have plans for your special needs child?
I have seen parents who have children with severe disability and they assume that the child would soon die yet the child has no such plans. In fact, the child is holding on to life with both hands.
A while ago, I told my mum that I wanted to write her biography. She kept quiet for a while and later said, if I had made that same statement to my grandmother, my grandmother would have asked if I wanted her to die soon. I knew the message was about her own fears.
The fact that you write a will, do a trust fund, plan for the future of your kids, doesn’t mean you are going to die soon.
The best time to plan the future is when you are physically and mentally capable to think things through while you still have the opportunity to do so.
In the next write ups, I will be considering the different things that you can do.
In the meantime, I want you to put into writing the following information:
a. Diagnosis
b. Care, drugs, therapy plan
c. Current Education
d. All future education
e. Medical history
f. Likes & Dislikes
g. Every other thing you have stored in your mind about your child
- Financial plan (e.g a trust fund, savings)
- Future Accommodation & Care support (don’t assume …)
- Contact details of all the members of your support system (e.g. doctor, therapist, care agency, teacher, etc.)
- Every other thing you know about caring for your child
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