170. Our Name is Not Ingalls

I’m sure, like me, you too just got off a Zoom session. We have been so busy doing classes and workouts and chats and webinars on various such platforms. I’m grateful for the opportunities to connect, learn, strive to stay healthy, and feel less tossed out at sea.

The one thing Zoom cannot seem to do is interest A in remote learning. Well, no, let me back up. School has not done that yet. They send us reams of links with activities that we are supposed to engage A in on our own. They also send emails and packets with the therapeutic stuff he is missing. 

I am pretty sure a LOT of work has gone into compiling those resources, and am amazed at how hard the staff all work. If they have not yet tried Zoom group classes, it is probably because not all families have access to dedicated devices, and/or reliable internet. The iPad that A has from the district has so many blocks on use, and is only meant for speech, so it cannot be used for anything else, really. So I imagine that families needing a computer for a parent to work from home with, and maybe a laptop for a mainstreamed sibling, or siblings, for whom Google classroom and endless homework are already in full swing, could find themselves with no other suitable gadgets for their special needs child to use for educational purposes. These kinds of disparities usually exist under the surface, but right now, they are glaringly evident, and school is not going to educate privileged kids while sidelining others. That’s only fair.

New Jersey seems to have decided that it is okay for schools to offer therapies online. Smirk; we all know why. Because of potential inequalities between what is offered to mainstream kids vs special ed, we had already been hearing many parents fretting about how, if special ed could not be accommodated, then, by law, neither should general ed move forward. Paranoid ruminations had been flowing from many a source about how Precious Nisha may not be Princeton-bound because of inconvenient priorities like, oh, the snowflakes in special ed. Sorry to say, I am underwhelmed by mainstream families on a semi-regular basis, and Covidlandia has been no exception.

Try not to be offended by my vent; these are trying times for special needs families. If our normal access to outside life was a tightrope walk, this is the moment when Wily E realizes he stepped off the cliff a while ago, and cycles desperately in the air, then plunges with awesome sound effects denoting bathos. Our already limited supports are gone, and we are not thriving. The webinars and support groups I partake of can attest to how many of us are just trying to keep things on an even keel so our kids don’t lose it entirely. This really isn’t the time for people whose youngsters can still benefit from alternative teaching methods to tell us that our kids might become the reason that everyone has to go without. 

We also have to, like HAVE to, talk about how the need for childcare so we can be productive is a lifelong necessity for those with high needs children. Working from home is not the same for our households. People can be flummoxed that we have a teenager and still cannot jump on a meeting, but they are only unable to understand because they have not asked the right questions of us previously, or seen how much planning and/or expenditure go into our every child-free appearance in public. 

If online therapies do become a reality, I will be interested to see how A fares. He has zero interest in anything school has sent so far. I honestly think the powers that be skipped a step, because the only thing he wants to do is watch videos made by his teacher, whom he misses. She sent one just saying hello (which I requested her to film), and another where she read a story. The other thing that has brightened A’s life considerably is doing video chats with aides, and with after school program staff. It is amazing to see his happy, smiling face, and the little antics he gets up to to make them laugh. Then he goes on to laugh and hug us for the rest of the day. I suspect that seeing their loving, encouraging faces assuages his nagging FOMO, plus his fear that perhaps he has been forgotten. These people are a huge part of his life, and he is too innocent to hide his longing for their presence and reassurance. I hold out some hope that a live therapist whom he already knows on the other end of the screen might engage him far more than any of the resources he has thus far looked at only fleetingly. His loneliness is palpable, despite the affection he can count on from us, and we are not the Ingalls family, accustomed to just us, except for the occasional foray into town for barn building materials. 

Since we might be doing this lockdown for a while, I will tentatively venture a guess that formal education for kids like A is largely over for 2020. Between the beleaguered healthcare system, states being left to fend for themselves, and the curve not yet being flattened for multiple reasons, there isn’t any way to open schools without being foolhardy. I wouldn’t send A even if they did, because I don’t believe that everyone there could say with any certainty that they are totally free of contact with the virus. 

Given the likelihood of no more school for the year, what are we hoping to accomplish? I cannot answer this with any confidence just now. Yeah yeah, life skills, fix cars, learn Morse code. But we have not had a moment to gather our own thoughts, so that sort of clarity has not come yet. I’m sure we will be having online IEP meetings to sort out possibilities. I am going to be attending those with a wet washcloth on my forehead. Because I am home, and I can. These days feel like an exaggeration of all the isolation and confusion that scatter our thoughts on a regular basis, and are amplified now. We need major help, but it is not going to come. A could legitimately lose the skills he has worked so long and hard to master. I hate that we have to deal with this. And I don’t care about sounding more optimistic right this minute. 

We keep hearing that if we should (God forbid) develop any symptoms of COVID-19, we should call our doctors. But there is no guarantee that anyone will test us. Or that if we should test positive, we will get access to a hospital. That’s how I feel about the messaging we are getting from school. They want us to reach out if there are any issues. They will attempt to triage from afar, feeling as frustrated as doctors do that they cannot actually lay eyes on the situation. Then they will make some behavioral recommendations which we will do our best to enact. Ultimately, though, the reality will be playing out in the absence of experts. We have to be the behavioral psychologist, the speech, physical, and occupational therapists. And if we have to watch A lose some skills, especially social skills, we will be on our own, like a family member tending to a loved one with only telehealth to talk to. 

None of us signed up for this level of sci fi aloneness, and we will learn to adapt. But it is a whole other universe trying to be everything to an autistic person when the infrastructure has slipped away. 




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