Susan's Blog

Monday, May 13, 2019

But Maybe Autism Parents Can Let Go?

What’s the other side of the “I can never die?” plaint of the autism parent? I’ve done a lot of writing about the need for more protections of our vulnerable guys who do not live with us. Even so, for many of us that is not a sustainable solution. And we are not the center of the issue, even though we love our children and want to protect them. No, they themselves are. And it is their right as human beings to claim their independence if that is what they wish.

So — perhaps we parents can take a lesson from — of all things — the story of Abraham and Isaac. Not the sacrifice part — sacrificing your child is never the right thing to do — but more metaphorically, in the sense that author Jon Levenson may have meant, in The Death and Resurrection of the Beloved Son — that our children are actually not really our own, our possessions. They are born to us to protect, teach, and love, but the purpose of having children is to create beautiful souls who can live lives of meaning and goodness. So when a very good friend of mine who had read Levenson’s book raised the possibility that the Isaac story in terms of the very real necessity of letting your child go, it made me think, and it gave me comfort. “We do what we can to keep them safe,” my friend said, “but ultimately what happens to them is not up to us.”  She’s not a Fatalist or a religious extremist. She believes in free will. But she also acknowledges that there is an entire random universe that has a say in what goes on.

For months I’ve been struggling with the question of where Nat should live. He has been home with us since early March because the shared living arrangement he’d been in fell apart. Yet from his late teens through this year, I’d been dreaming of Nat in just such a “normal” setting in the community with caregiver friends. But once we had achieved this, we could see how it was not enough support for Nat. But I was resistant to group homes because of horror stories. No, I would simply have to take care of him myself to keep him safe. We’d buy a two-family home with a caregiver living right downstairs with him. We would share the care of Nat until we no longer could. But then what? Who would become “us,” in the upstairs apartment? Would it be Max and Ben, Nat’s younger brothers? No, because they are on their own paths.

We need to be able to build lives for our loved ones where they can exist without us. But how? And then, just a few weeks ago, remarkably, another wise friend said something that put group homes in a new light for me. “Group homes can be something not to resign yourself to, but something to be excited about.” But how, I asked, given the potential for abuse? She said that we take big risks all the time, we just don’t think about it. Bad things can happen to anyone. Even Nat. (And so they have. And not while he was in a group home, by the way.) But bad things — God forbid — can also happen to Max and Ben. And Ned. And me. When you look around, you see that bad things happen anywhere, out of the blue, at any time. Car accidents, gun massacres, measles outbreaks, floods, drugs, cancer, suicide, divorce, homelessness, the Trump presidency. This may sound like a terribly pessimistic appraisal of the human condition, but it was bizarrely comforting. Because it is the way life is. Unpredictable, at times scary and horrible “red in tooth and claw,” according to Tennyson.

The truth is, that in a good group home there are many “eyes on,” meaning, there are enough staff to take care of and watch out for your guy. Conversely, there are four other people in need of care and so you really do have to learn to suck it up a little. And if you have a need not being met, you have to learn how to get that taken care of. You learn how to deal with others who don’t love you and may not understand the way you communicate. This applies to both staff and other residents. Group homes also offer structure, again, because they must. There would be too much chaos to run a group home without a schedule and expectations.

I’ve done due diligence. I have found group homes that are good, not at all grim, and long-lived. So we do not have to set up our own (risky) situation. My family need not spend tens of thousands of dollars a year on support staff — and what is the guarantee that private group homes staff are any safer? The beauty of public programs like the Medicaid waiver are that we don’t have to reinvent the wheel, or set up alternative programs that offer the “dignity of risk” through fewer supports because actually there was too much risk there for Nat. Just because a setting looks shiny and hip because “Thank God it’s not a state-run group home,” it doesn’t mean it is good. A more inclusive, less supported setting wasn’t good for Nat — or his former caregivers. And there is no shame in that. Perhaps there is even less risk of stress and burnout in a group home because of the increased support.

Because life is so many things at so many times, we do need to take risks — smart risks. We need to keep having children, loving them with all our hearts, devoting our lives to them. But we also need to step back and let them grow up. We need to “teach our children well,” as Crosby Stills and Nash say, make intelligent choices, but in the end we are flawed, as is the world, and life. So what to do? We live our best lives anyway, hope for the best, and crawl, broken and defeated, out of the hole to live — as well as possible — again. All the while, trying to repair that messy road so that you and others do not fall in. Maybe not with the blind faith of Abraham, but a wise and informed faith. With our children we’ve got to know when to hold ’em — and when to walk away.





You are lucky to have the Medicaid waiver. Our ASD son has been on a wait list that hasn’t moved for years, and he is likely to wait >10-15 years more, before that support might come for him, in our state (of affairs). We are on wait lists for any available housing options. No idea when those may open up. We cannot afford to get him an apartment AND pay for a private caregiver.

— added by S on Thursday, May 16, 2019 at 12:09 pm

I’m so sorry. Here in Massachusetts we are fighting for an “accessory apartment” bill that would allow families to build onto their homes for their loved ones, no matter what the zoning says. Maybe one can get a first-time buyer loan with zero interest?

— added by Susan Senator on Thursday, May 16, 2019 at 1:40 pm

This may sound terrible, I don’t really mean for it to be but–I am hopeful I live into my 90’s. Once I pass on, it could be good if my autistic, nonverbal son were to suddenly die from anything sudden and painless. And then he will still be with me. There was a young autistic man my son’s age who was murdered in a residential facility in our town about a year ago. That could have been my son. When I am gone, there will only be his sisters to care for him. I’m not sure they understand the responsibility or even be able to supervise his care. To think that he could potentially be out in the world one day virtually alone is a thought I cannot bear.

— added by Sharon Jones on Wednesday, June 12, 2019 at 10:03 am

Yes! As a professional, I prefer group homes (well run) because of the “eyes on” and over sight. And the life long possibility for the residents and their families. Have seen shared living and sometimes it works well but when the caregiver is tired or has had enough, everyone starts over. So hopeful for Nat and you that this is good!.

— added by Michele on Friday, June 14, 2019 at 7:40 pm