I’ve thought a lot about whether to share what I am sharing. I’m pretty sick of tiptoeing around what’s been going on here. Over the summer, we had to ask the state for crisis intervention. A’s aggressive behaviors and meltdowns and complete lack of sleep schedule had worn us down so badly that we just couldn’t function anymore. Seriously, fvck anyone who has stopped following COVID precautions. We cannot do this life without help, and all around me are people with high needs (family and friends) who are BREAKING because their lives have unraveled beyond recognition, and they can’t always summon up the coping skills to power on.
As an aside, I am observing a lot of behavior that can be roughly categorized into some folks a) assuming that haphazard distancing equals being really careful because it still feels alienating and sacrificial; and b) focusing on the feeling of frustration and declining mental health, and using that bottled up rage to say “Well, I am not going to be lectured to by a bunch of fearful rule followers; if you are so worried, you stay home.” Neither of these ways of thinking and acting is going to end the pandemic, so we are back to please, for God’s sake, be part of the science-based solutions.
Anyway, poor A was losing his marbles over the summer. He slept about three hours a night, and we were lucky if they were three consecutive hours. He fell apart for hours over each deviation from his ever more stringent expectations. We had no quality of life to speak of, and no sense of hope.
So we called the state, with the plan to ask for behavioral intervention and respite care. And let me tell you, they cannot do much. If they cannot apply a paternalistic template onto you, they really have little to offer. To be fair, they cannot even safely visit our home right now thanks to COVID, but since anyone who calls the state also has to wonder if they’re opening the door to potentially having their child removed from home, I don’t really want them to come over.
The other piece to not being able to meet A in person is that they misjudged his needs and assigned him a talk therapist to meet online with. I mean, I think my kid’s AAC (in his case, speech app on iPad) skills are wonderful, but they are not developed enough to share his inner life with a face on a screen. We nixed that plan.
In a recent follow up meeting, we were told that it was close to impossible to find a behavioral specialist because we had indicated that we would prefer a guy. Not trying to be sexist, but past experience has shown us that this is necessary, since his aggressions tend to send the female ones away, and the constant personnel changes bring on more instability-induced upset.
The state peep also meandered down the path of trying to teach us how to manage our emotions, which, I don’t know, seemed offensive to me. I want every behavioral therapist who talks down to us to come do what we do every day. Not just for two hours here and there, but all the time. And especially now. Oh, and you can’t have any of your data gathering or PECS or BCBA guidance behind you. Manage your own emotions under the circumstances we have before us. Try to shower when you cannot leave the child unattended, and he’s not three years old, or even ten, but a strong, resourceful teenager. Work at your “actual” job while also practicing this level of vigilance. Maybe then we can have a conversation about how to tell someone to get a better handle on their reactions. We would never mistreat or neglect A, but we also sometimes find our nerves frayed and our brains fried from lack of meaningful rest, and constantly trying not to fail at gleaning his needs.
The other not so glowing thing I want to say about interacting with state services folks is that they seem to have close to no training in cultural competence. And the only reason that would be true in such a diverse state is that they don’t have meaningful diversity in their own staffing.
Old me would have taken note of these patterns in how we were spoken to, but not had a way of capturing what was off about them. But thanks to the generous teaching of people who have made studying inequity their life’s work, I could perceive it readily. It is worth noticing because it prevents us from grasping at false hope, or from falling into officialdom’s discriminatory traps.
This sort of discrimination, even if unintended, has potentially harmful consequences for high needs families like ours. I recall the first chat we had, the person seemed nervous that we weren’t saying much at first. But a) she was talking non stop, b) we were tired and didn’t have the bandwidth to figure out when she might pause, and c) we were waiting to hear what info she needed from us. She finally said something like “I know I talk really fast, and if you don’t understand something, let me know.” I realized Ohh my, she thinks we are lost language-wise.
So even when someone is trained to meet with people who are actively in crisis, we are expected to perform in ways that are mainstream. I remember that from when A was in the hospital too; no matter the exhaustion and fear, there was always a need to perform normatively. You would only say that race (or other identities that invoke similar reactions) doesn’t matter if you aren’t treated as being outside the norm. If you are, imagine how that could play out re: someone making a determination about whether you are acting in your child’s best interests or not.
You know what being able to perceive all of this subtext leaves us with? It shows us that, as long as the pandemic is still uncontrolled, we have to do this on our own. As Amy Siskind always writes, no one is coming to save us.
Two strategies did actually help: A) We got some as-needed prescription meds for A. These are occasionally helpful, but I am still grappling with my conscience about them. Maybe you are reading this and going Oh no, how could you medicate the poor angel without trying yoga-ayurveda-reiki-elimination-diet. Or you are going Why would you feel bad about doing whatever works. Well, doing what we do is a murky journey. Moral ambivalence dogs our every step, and this year has been full of such ambivalence times 10,000.
I’m thinking of Feda again–the mom I wrote about in Post 182 who died in a house fire with her autistic son Muhammed. Back in the summer, she started a podcast called The Scoop, and had done about six episodes. I related so hard to how she allowed herself to be bitter and angry about what the shutdown had done to her son. He had, up till that point, overcome so many hurdles, and come to enjoy doing a few things in the community, and now everything he had relied on was inaccessible. He was also sleeping erratically, and not trying very much to communicate anymore. She talked about not being able to manage him physically because he was very large. Those things are difficult when it’s just you with no supports.
Feda was also funny AF, and I have downloaded those episodes because she was amazing and eccentric, and I am already on my second round of listening. BUT we shouldn’t have to be entertaining so that people will feel drawn to help us. All the online support groups I am in contain evidence of our growing exhaustion and despair, compounded by unrelenting isolation. We aren’t making cocoa and carving pumpkins in our households. And honestly, I am glad we all have somewhere to lay that truth, without being told platitudes that make us feel more alone.
The thing about Feda’s humor, and my bookishness, and my husband’s endless knowledge of movie quotes, and R’s hilarious memes, and A’s musical bellowing is that we are all these things, but they get written over by the lack of resources available to us. So we come across as tunnel vision-y. Well, there is no reason for us to feel self conscious about that. We, including our kids, are doing the best we can.
One thing that the state services coordinator did suggest was that we tap into our existing circle, and identify people who might be able to show up online for A on a regular basis, so that he could have a sense of expansiveness in his social and emotional life, and not always have to interact with his boring (hah) nuclear family. So I chose a few people who had a high likelihood of staying the course, and IT HAS BEEN AMAZING.
Ergo, B) the other strategy that’s been brilliant has been bringing in these wonderful people. One of my sisters is running a religious chanting class which is designed to be autism centered. It starts and ends on time, for one, which is really important, so that A’s goodwill is not squandered on waiting around. It follows a predictable pattern. And there is lots of movement. Really, it’s genius. So often, we thoughtlessly plan mainstream events and then try to stuff autistic kids into that framework, and call that inclusion. But what we are seeing twice a week is the opposite: that autism focused activities work for other people also. And that’s what we could be doing with a lot more of our ideas. A and the other kids in the class are experiencing what religious gatherings should really be.
Once a week too, R and his cousin who lives out of state play Minecraft to entertain A. It has also been a roaring success. The delight of seeing all these young people show up for one another cannot be described adequately in words. Teenagers are busy people. But even if they have to reschedule, they never cancel. And A goes into paroxysms of joy when everyone is “gathered” in his room. Anyone who has a group of friends or cousins to hang out with knows what that comfort zone is like. Thanks to these young folks, A has it too. I am deeply thankful.
I also want to give a huge shout out to my friend AK, and her fabulous family, who opened up their pool to us so that A could have a late summer splash, and who have been a regular fixture in his life ever since. They are now our tribe.
I started this blog post quite a while ago, and kept adding to it in a desultory fashion. It felt too vulnerable to put out there what we’ve been struggling with. And I also felt like a rank ableist for admitting that we are drowning. But it is part of living with someone with extremely high needs, and the threat of COVID has made it infinitely more impossible to arrive at solutions.
To be honest, nothing much has shifted. A still has truly difficult days which make us all feel caged. But he is a sweet little potato under it all, and we cherish the days when he is able to hug and kiss us, and romp with R, and bellow in mirth rather than rage. We don’t expect any miracles right now. And truthfully, we will probably not ever call for help from the state again, given that it has been so time consuming, and that no concrete action has resulted.
Where does that leave families like ours, though? And if people don’t know how to help us, how do they think we are going to make this journey almost entirely alone? Indefinitely? No one is coming to save us.