Judging the Parents Shouldn’t be a Spectator Sport

Many years ago, I had a friend with advanced degrees and the kindest heart. This person needed significant support with activities of daily living. I know the level of support required because I was trusted enough as a friend to be asked to help provide those services more than two decades ago so that the family could go on a brief vacation. I will not be discussing further details out of respect to the family as this loved one passed away some time ago.

Shortly after the vacation mentioned above, the family decided a group home placement was necessary because they wanted a break from being full-time care givers. This was very contrary to my friends wants and wishes, and I am not going to lie, my heart was filled with a whole lot of “I would absolutely never…” judgment towards the parents.

Now, more than two decades later, life has taught me many lessons. And I will tell each of you, my much younger self had no idea what the long-term impact of providing a high level of 24/7 support can do to a person. I sure do have a taste of that now, because now we have a son with significant needs, and I myself have experienced the onslaught of judgment from so many sources- none of whom are actually directly involved in providing care or support to him on a daily basis. Except, I can’t even begin to imagine anyone I know other than my husband being comfortable enough to step into my shoes so that our family could take a vacation with the other members.

I have heard some of these judgments directly. Medical professionals, for example, who have said things like “we thought your were exaggerating when we read this form, but you’re actually not.” Nope. Or people who think I’m lying, lazy, crazy, or otherwise somehow screwing this all up. I have said it before and I will say it again, if there is someone who is dealing with very similar circumstances to ours and is doing it better, I will gladly sit at their feet and take notes. Copious notes, filled with as many details as I can cram in, because I need as much legitimate help as I can get. Uninformed judgments, not so much. But often I find that this generally unsolicited type of opinion is the only kind of offering that is not in short supply.

Until that blessed hypothetical day should occur, I’m just doing the very best I can to love and raise both of my children under extraordinary circumstances. And some of us, as parents, have to make very difficult choices. Everything I personally do is about trying to help our son obtain enough skills to where he won’t need a locked down total care environment. I will again quote Ricardo Thornton this week, who said the following of his experience in such a facility: “I witnessed abuse, especially of people with severe disabilities.”

Those of us who live locally may still recall what happened at Hacienda last year, where a young woman with intellectual disability and significant functional limitations was raped and none of the other staff allegedly noticed or documented that she was pregnant until she went into labor. Genetic testing of the baby resulted in the arrest of one of her nurses, and further medical examinations, according to NPR, led experts to conclude that not only had she been repeatedly raped, but that she was likely pregnant more than once.

This is not the future I want for our son, no matter what his challenges or limitations are, and everything I do is predicated on a hope that he will be able to continue to learn and progress enough to remain in our home as long as I am physically able to meet his needs. But that is my choice for me. This is not a choice everyone feels able to make based on their own personal circumstances, and as a community, I think we need to wrap our arms around the parents whatever their choices might be just as much as we need to wrap our arms around their children.

If my friend’s parents had known what was in my heart, I feel like I would owe them an apology. An apology of exceeding depth and sincerity that still might not provide enough balm to cover the wounds of so many years being on the receiving end of community recriminations. If I had one thing I could say to my younger self or anyone else, including someone who themselves is in the position my friend was in, it would be this: go easy on the parents.

You have no idea. You really have absolutely no idea what they are truly going through and the depths of what they are sacrificing. And so many of us are just trying to do the very best we can.

The choice to omit pictures his week was deliberate, because it reflects my feeling that usually people don’t actually see the full impact all of these experiences have had on me. Sometimes it’s like I might as well not even be here at all, because so much of everything I wanted for myself personally in life has been laid upon the alter of doing what I think is right for my family.

And sometimes, when I am speaking publicly about the effects of certain experiences on me personally, I greatly minimize out of a desire to educate rather than wound others. My husband described me to some of his co-workers once as a Spartan because I can seem like a machine and function no matter what when things need to get done in our family. But the truth is I am not a machine, and all of that pain and all of that judgment are like shards that have to be painfully pulled out of my heart one by one.

I have spent the last several years learning how little I really do know about other people’s circumstances, and trying as much as I can to stop throwing sharp splinters of judgment at my fellow parents. We all need a little grace sometimes. A lot of grace, really. And my hope is that we can all learn to give that to one another.