The comfortableness (is that a word?) of this topic is the same as your own parents sitting you down to talk about their wishes upon their deaths, where to find their policies and what information you need about all of their accounts in the even of their passing. It’s something you NEED to know but don’t want to think about because it brings our own mortality to light not to mention the emotional aspect of the thought of losing a parent.
Now we couple that with the thought of the emotional implications of a child (no matter the age) with a disability who may or may not understand the whole process of death much less that mom and/or dad may die and not be there to take care of them.
My heart breaks at the thought of my son trying to figure out why mom or dad isn’t here anymore . Our little man understands death to some degree (we have lost elderly pets and some relatives that are not super close to us) but still doesn’t “get it”. I don’t want to think about how he will get along in the world as a minor or an adult without us there to help guide him. Unfortunately, that isn’t very realistic…no matter how much I want to hide my head in the sand.
We, as parents, all have to think of the possibility of something happening to us while our children are not old enough to take care of themselves and make plans of who will take care of them, what we can provide financially for their care and trying to make wonderful memories for them while we are here. Those of us with a child whose successful transition into adulthood is uncertain have even more to think about.
Parents of a child with a disability have to think beyond 18 years old. Some of us know that our children will never be able to live on their own (for health reasons or the ability to take care of themselves). Many of us just don’t know what the future brings.
Our son has a diagnosis of PDD-NOS, which means that he is on the autism spectrum but at the time he was diagnosed he was too young for the doctors to know exactly where on the spectrum he fell. Now, he fits into the Asperger’s category very clearly. With this new category, we know that he may very well grow up well and be able to marry, have a career, have children and be very successful in life….or maybe not. The uncertainty makes it that much more difficult to plan for his future in the event that the unthinkable happens.
We, as his parents, accept the responsibility and uncertainty that he may or may not have to live with us for extended amounts of time after turning 18…or even for the rest of his/our lives. At this time we don’t know if his common sense, basic care abilities and reasoning will allow him to be able to handle his own care or not. He is only six so the future can go anywhere at this point. To have to ask anyone to take care of your child(ren) in the event of your death is hard enough; but to have to ask someone to take care of your child(ren) and “Oh, by the way, he may never be able to leave your care.” is a HUGE thing to ask of someone who did not bring this child into this world.
We have had this discussion and have chosen the person who will be caring for both of our children if something happens to us while they are still minors…and my son if he needs to be with someone for years longer. It was not a comfortable discussion to have. It was not anything that we ever wanted to think about. It had to be thought about and it had to be done. We are blessed that there are people in our lives who would not think twice about taking our children and caring for my son longer if necessary. We have a back up if something happens to the first person or she changes her mind. I don’t think that she ever will but it is A LOT to ask of someone.
Thank you, God, for giving me people in my life who love my children as much as they have their own. It allows for my heart to know that no matter what, my children will always be taken care of and my son has support as an adult if he should need help or cannot live on his own. Although, with the way his little sister likes to be the little mommy to him, I have a feeling that he may have someone who may be TOO MUCH in his life no matter what. 
I can totally, see her trying to run his life as an adult. Oh well…that is what us little sisters are for, right?
