The system isn't broken; it does not exist.
For five years we have been looking for supports to help Benjamin develop as a young man and pursue some of his life goals. He is unable to pursue those on his own to the extent that all of us would like. He needs help. He needs safe environments, but ones that provide opportunity. He needs to feel valued. He needs to be able to pursue some of his goals.
Ben has a lot of independence, both of mind and of action. That independence often runs into very real limitations, some of which are internal to Ben and others of which are a very practical nature. He doesn't understand either of those sets of limits, and so he spends most days hopelessly frustrated. Frustration often turns to anger.
As part of the social contract we hold as a society, our family gladly pays to support others in our community who have needs: homelessness, financial distress, physical limitations, food security, public education, non-typical neurotypology, mental health, etc. In return, Benjamin deserves access to the supports he needs.
Except, there are no available supports for Benjamin. Every perceived opportunity meets a roadblock. "We don't have the staff." "Another resident is too similar." "Our programs aren't adequate." "We're concerned about managing his behavior." "There is no available space." "We really like Benjamin, but..." The list goes on. Oh, but we'll keep him on our "list."
In the meantime, in order for mom and dad to pay the bills, we work and Ben has an in-home personal assistant. Only the PA is so limited in what they can do for Ben that it's really just a placeholder. It's not good for Ben, and while it's necessary for us, it's not good for us either.
Ben can actually be a beast. Some of you know this, but for instance last week he had a major breakdown because we couldn't authorize a $600 payment for something he wants and doesn't need. Every limb on me is either bruised, bitten, or strained. In order to prevent him from hurting himself, me, or his surroundings, I had to physically restrain him until the police could arrive to provide a buffer. We are fortunate that we have a well-trained and competent police department.
Our son is like a freight train. He starts coming at us verbally with expectations and needs from the minute he awakens between 4:00 and 5:00 a.m. until he eventually goes to bed, sometimes after 10:00 at night. It's not limited to in-person, as he has mastered the telephone and talk-to-text. To direct him into something that he hasn't already decided to do takes a day's worth of energy, and only sometimes is successful.
It is exhausting. And there is no help on the horizon because there is no system to actually support someone like Ben. How do we know this? Because we have been told this now for five straight years.
I'm not writing this for sympathy. Parents do the best they can, which is what we are doing. I'm writing this so that you understand that people like Ben, and families like ours, live on little desert islands. Our life is dictated by a deletion off the 7th chromosone. It has a name: Williams Syndrome.
Before you get on your high horse and say that we control our situation, come live in our house for a couple days, weeks, months or 27 years. Even those with WS have different expressions of the deletion. We do what we can, but we can't do this alone.
Thanks to those of you who are our friends and Ben's friends. We do appreciate you. This tirade is not about you; it's about a system that doesn't even promise because it knows it will fail.
Some days, like today, it's just about too much. I am exhausted emotionally, physically, spiritually, mentally. There is no break. There is no vacation. There is no time off. Some days are less exhausting, but ultimately it always adds up the same.
There's really no point to this post other than the fact that we had yet another rejection from a potential support system today. And Ben has called and texted me, angrily, a thousand times about his lunch, his needs, his frustration, while I'm trying to work at my paying job (that I love, but has significant responsibility). And finally I gave in and said, "Just buy your lunch and leave me alone."
Some days that's what I long for the most; something for Ben to do, someone else to support Ben, so he will just leave me alone. Of course I love my son. Of course there are moments of joy with Ben. But mostly my heart aches because we cannot see the way forward for Ben, or for us, and we can't go on like we've been.
Illinois is one of the worst states for said supports. We know this. We knew this when I took the job with the church that brought us here. But here we are. We could move. Of course we could move. So easy, right? No energy to move, to find a new job, to make new friends, to recreate our identity yet again in a strange place.
If you read this far, you really must be one of our friends. When we talk about state budgets and policy issues, we're not talking about an idea. We're talking about people. People like Ben who need their village to come up big so that they can live a bigger life. We can do better, and I know a lot of "industry" people who are really trying to do better. Thanks to each of you! But better is not coming quickly enough for us.
And that leaves me exhausted and sad. Especially today.
