Calling all parents of teenagers and adults who have Down Syndrome…I need you to pause and seriously consider the following words: What happens to my child if I die?
Mom…or Dad…have you stopped to really think about this? I know that death is never a welcomed topic. I know that confronting our own mortality and the fact that we are indeed getting older is a very frightening experience. I get it. You are afraid. Guess what? So are millions of other parents around the world. You are not alone. Your feelings are actually quite understandable.
So, what next? Do you stand there, frozen in time and paralyzed by fear? Or do you find an answer to that question…afraid and all?
Things Can Go Left Real Quick!
You may say to yourself that you have time…after all, your child is only a teenager. But did you know that Future Planning is a life long process, not an end of life process? Think about it. Your child will go through different stages of life, just like everyone else, and thus, needs your guidance and preparation for each stage.
Here’s a hard truth: Mom/Dad, you will not be around forever. Here’s something else that I know to be true: I know that you want to outlive your child. No judgment. I get it. I understand. But, how feasible is it that your child will actually die before you?
I want you, in this moment, to be honest with yourself. God forbid, if you were to leave this earth today, where would your child end up? With a family member that you hate? In an institution? Homeless shelter? On the streets?
Start The Conversation
Whether you have family members to count on or not, whether you have money or not…future planning is possible and it starts with a conversation. The earlier you start to plan, the better.
If you have family members…siblings, children, cousins, nieces or nephews…or close friends, please start the conversation with them. Find out where they stand in terms of their willingness to help in the future care of your child. Are they willing to be the next primary caregiver? Are they willing to only help out with certain things? You will not know if you do not have the conversation.
If you do not have family or friends, then you must start the conversation with the various government bodies who offer support to families of persons with Down Syndrome. Is there a local Down Syndrome foundation? Is there a national disability body? If you live in the United States of America, try The Arc. If you live in Jamaica, contact The Jamaican Association on Intellectual Disabilities (JAID ), the Jamaica Down’s Syndrome Foundation (JDSF) or the Jamaica Council for Persons with Disabilities.
Not having support from friends and family does make things harder and the journey can get quite lonely, but do not lose hope. There are several organizations out there that can steer you down the right path. Yes, it will take work and you will get tired and feel like giving up. Just remember, you are doing the best that you can and HappyDowns is here to help you in whatever way we can!