Institutionalization

How do you accept that your child is institutionalized?

Our country, and much of the western world, has deemed institutions to be not where our severely disabled children and adults should be, so we’ve switched to a group home atmosphere. As I have found, the group homes are still institutions, and the care of our loved ones can be very different than what we offer as parents or even children of elderly patients. How do we accept this? Should we accept this? When is it appropriate to try and make these situations work?

This morning, I angered the orthotist assigned to making my son’s othoses (AFOs). He said he visits the 64-bed sub-acute facility along with my son’s 15-bed intermediate nursing facility every Thursday morning. He cast my son, with the help of an associate he brought with him, without me there and decided upon a style and color of orthoses without my consultation because he didn’t know I wanted to be there or that I was involved. He said he ordered a “standard boot” AFO for my son. I told him that my son has had many different “boot” AFOs and we both know they are not standardized. He then tried to tell me that Medi-Cal only authorizes certain types here in CA. I said my son has private insurance that must be used first and that his Medi-Cal is secondary. He said he was not aware of this.

The orthotist then told me his company has been in business for over thirty years and that he has been going to the facility himself for over ten. “So what,” I said.

So what. Not the best reply, I admit, but he’s obviously not used to an informed parent or even an involved parent. Institutionalization at its worst. No, not at its worst but at its usual.

Would I be better off being ignorant? Would I be better off not knowing what the most highly regarded people on the subject have said should be done for my son? Twelve years of every known kind of specialist rounds throughout all of southern California and Boston have informed me, for better or worse, and am I now supposed to trust the care of my son to a couple of people that work by rote on kids whose families don’t know any better?

Maybe I am. Maybe it doesn’t matter in the end, but I don’t know if I can live with that kind of apathy. I know I can’t.

I was going to write that I have overlooked so many things that bother me about my son’s care, but, in reality, I have accepted much of what is happening or not happening with him. Things never go overlooked. They go un-complained about.

I am hoping that my son’s uniqueness pours over into this situation because I want the people who really need their loved ones to live outside their home can live with that choice and even be happy with their decision. I hope my situation is unique in having a son who can crawl yet is cognitively so low functioning he does not know his name because it makes life hard to create a safe and healthy environment for him.

It would be easier if I hadn’t devoted my life to taking care of him and searching for a diagnosis and everything that is best for him for the past twelve years, but I did. As the facility nurse said, maybe I am just not cut out for having my son live away from me. Should I try and change me or the situation? Believe me, I have many telling me that I need to get over these things and move on… that my son doesn’t know the difference. And he probably doesn’t know the difference. But I do. I can’t seem to escape the knowledge. I can’t escape the desire to want to be there to comfort him and make sure he is safe.

I sought out this facility. I made the decision that I could no longer care for my son by myself and that home nursing was not adequate help, and I made this decision after years of trying to make a life for myself and failing. This brings me back to either accepting the institutionalization of my son or not. There will always be people encouraging both sides of the argument. There will be good days and bad, even good months and bad in both situations. Like faith, it is a personal decision and a leap. My mind may hold one belief but my heart and body frequently follow another.

No one is saying, “Bring him home, and I’ll help you if you need it.” Only my daughter, who turns twenty today, has said, “He’s only twelve. Doesn’t he belong at home?” Yes, but he will still be the same when he is eighteen and twenty-two. Does the question change when he is no longer a minor? Will I wonder why I cared for him at home when he is still the same at thirty and I am old and tired?

And lucky me, I get to go off and work at the mall now and please all the holiday shoppers! Sometimes, I see a family with a disabled child walking through the mall, and I feel sadness and longing for my son. But it’s a good thing that I feel that way, isn’t it?