Nov 11, 2011 0 Share

The Great Unknown

Young and old hands together on a cane.

Having to think about certain “what ifs” of the future are quite difficult for me when it comes to pondering, where would Cody be if—God forbid—something happened to my husband and me and we were not here to care for him. Nevertheless, it is an issue that we must face for the sake of Cody’s overall wellbeing if it were to happen.

We also have to face the possibility of finding alternative day care for Cody. When Bill and I are working and Cody’s day hab staff is not working with him, Cody is home with his grandmother who lives with us. She is 84 years old and in frail health. Her memory is not always up to par and she needs lots of reminders from us just to make sure the Cody’s basic needs, such as breakfast and lunch, are being taken care of. We are managing with it all now, but very soon the probability that Cody will need alternative day care will be a reality.

In other columns, I have talked about our experience with an adult day care provider and how it did not work so well at the time. Perhaps looking at others in our area will become a necessity if we have no other alternative. Hopefully there are ones out there which are more suitable for our son. That still remains to be seen. We have already been brainstorming to arrive at a viable solution.

With respect to what would be the outcome if the unthinkable should happen and Bill and I were no longer here to love and care for Cody, this too has the both of us racking our brains to create a plan to make sure Cody would have a stable home with people he knows that will love and care for him in all the ways he needs. I do have family in the near vicinity, however Bill does not. Bill’s family is scattered throughout the United States. But the problem lies not so much in the locations, but in the situations with their families. They all have family members who are already in need of their undivided attention. How would they cope with adding another adult to the mix, especially one with autism?

I was asked about my thoughts on a group home for Cody in the future. Let me say this: I spent three years working in one. In spite of the fact that the majority of the staff there were very compassionate and mostly wise in their care and decision-making when it came to the care of the residents, a group home is not the answer I wish to see for Cody. In group homes, especially those that are funded by the state, staff is taught to keep boundaries. Everyone needs certain boundaries, this is true. But for residents to never hear the words, “I love you.” from those who are supposed to care for their every need, is to me, a cold existence. To think that my son would only receive a side hug in lieu of a warm embrace is at the very least a heart-wrenching thought. And if he were to initiate a hug then he would be directed away from what he has always known and felt, and has been taught by Bill and me, to be a perfectly appropriate show of affection. And to think of him living with complete strangers, whose diagnoses may include psychiatric disorders, more than troubles me in a profound way. But the unfortunate reality is that people like Cody do end up in group homes like this where they would never be able to thrive, and where their whole being could potentially be at grave risk for physical and or psychological harm. Right now, I can’t begin to bring myself to even consider this alternative as a possible living arrangement for my son.

While Bill and I have never meant to become hermits or anti-social people ourselves, it is a fact that we do not have friends with whom we are close enough to ask or even consider as future adoptive families for Cody. We have little time to go out and socialize in the traditional ways other people do. The possibility of us making friends in the future, who we could feel comfortable enough to consider asking them about such a monumental undertaking, is slim to none.

This all leads to the consideration of assisted living. But would that even work for Cody at this stage of the game, when he still has so much to learn? I can only hope and pray that if this is what lies ahead for Cody, it will be much further down the path and Cody will have learned all he needs to know to make this kind of living arrangement a success.

But truthfully, I pray and live every day in faith that God will provide a much better solution than what Bill and I can conceive of in the way of supported living for Cody, should it become a reality that we were no longer here to provide for him ourselves, and he were unable to do it on his own.