The biggest challenges I face with my #autistic kids on #COVID19 lockdown



As I’m writing this, we’re about halfway through day 59 of lockdown, and I’ve yet to find success in establishing a new routine. While autistic kids need structure and routine, they are also very, very resistant to change. Beginning a new routine is a lot like planting a flower. Not every seed is going to take, and not every routine is going to work. That’s just the way it is.

One of the things that make this more challenging for me is that I’m on my own. I’m very much hitting a wall in regards to my own personal abilities and limitations. Implementation of a new routine is a lot of work. It requires commitment and consistency if there is to be any hope of success. Unfortunately, I’m in a place where I have no choice but to pick my battles and often, the path of least resistance is the only way forward.

The other challenge I face is trying to establish one routine for three unique autistic kids. Ideally, I would find one routine that works for everyone, but that’s proven impossible thus far.

Even basic things like consistent bedtimes, meal times, and wake up calls are challenging. Everyone, including myself,  is experiencing sleep disruption. I’m not sleeping well at all, and neither are the kids. Everyone is stressed, overwhelmed, and extremely anxious. For families like mine, COVID19 lockdown is like a perfect setup for a worst-case scenario.

Schoolwork has been a serialistic nightmare, and I’ve had to put an end to it at this point. I feel awful about that, but we’re barely surviving as it is, and school work only made things worse.

My goal for this week is to focus more on subtle changes that I can build from. This isn’t the first time I’ve tried this, but I’m not ready to give up. I’m using Mightier with Emmett, which helps him learn to emotionally self-regulate, and it does it in a way that he’s learning things without being aware that he’s learning. I want to model that approach somehow and find little things I can do that build up over time towards a new routine. It’s a much slower process, but it’s all I have at this point.

I figure if the changes are small enough, the kids will be less resistant and adapt more easily. That’s my theory anyway.

I’m working out a plan, and I’ll let you know how it goes. One of my significant concerns is if I end up having to homeschool or do online schooling for the kids this fall, we have to be in a position to pull that off. If I assume that’s the direction I need to go in; I can work on small changes that will help to prepare them for that.

For the record, no part of homeschooling my kids a good idea. The problem is that without a vaccine, so many people not doing their part, and States opening too quickly, I have to assume the predicted second wave is going to be as bad as the experts are predicting. Gavin is immunocompromised, and the only way I know to keep him safe is to approach this as though we’re all immunocompromised. It’s not ideal, but I’m one person, and there’s only so much I can do.

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Curtis G.

Yes in our world we need money to live but you have to live to make money. It’s beyond me why people are protesting against the reality of the fact that not following social distancing, wearing masks and gloves and protecting the lives of yourself, your family and others supercedes monetary obtainment. The harsh reality is that people are dying in amounts that haven’t been seen in 100 years. Life is far more important than money. Money is paper, lives are precious. And I don’t want to get started on the fools partying on beach, house parties and strutting around with automatic weapons at protest rallies and waving nazi and racist flags. I had hoped some of us were better than that and we’d all pull together, instead of apart. And yes, I understand the fear of not being able to pay your rent, mortgage, buy food, etc. but your life and those of your family, friend and even people you don’t know is the main priority. Eventually, somehow you can obtain money but once a life is extinguished by this virus, that life is gone forever.

Wash Dinosaur

What Curtis? What about a gradual return to work while maintaining safety and sanitary practices? Just because someone wants to go back to work doesn’t place them in one of those groups you described nor does it mean they want to abandon safety and sanitary practices.

Jeannette Solimine

I totally sympathize with your predicament. Personally, I think you are doing a fantastic job in very difficult circumstances and are making necessary, though difficult, decisions to keep your family safe. My autistic daughter is no longer school age, but my younger immunocompromised severely disabled daughter still has one more year. We are in fairly strict quarantine to protect her and my husband who is well over 60. My autistic daughter’s routine has been totally destroyed, and we are trying day to day to deal with the changes. She is slowly adjusting but she always wants to know when she can go out again. She doesn’t understand that her going out and interacting would put her sister at risk even if her sister stays home. In Washington state, we are still shut down, but I live on the border with Idaho, which is starting to open up again. I’m very worried that not only will cases spike in Idaho, but they will increase here too. We’ve been lucky in that our county has had very few cases and no deaths. I pray for you and your boys. I pray they find a vaccine that works soon, as well as a treatment. Stay safe. Be well.

BJW

It’s a good thing that you are looking at reality, and not some kind of “everything is going to be fine, let’s open everything wide up” optimism. Because there is zero evidence that shows that to be a good idea, even if we have idiots running the federal government and many states have obsequious governors. The majority of Americans still believe in sheltering in place. If we don’t have adequate testing capability, I don’t know how anyone can believe we can plan on reopening the economy. Because our economy requires enough people to be spending money and feel safe, and that’s not going to happen with a death rate heading for 100,000. (I suspect it will end up being much higher, as Trump isn’t going to do anything to actually help.)

Maybe, just maybe, the regional coalitions of different states will be able to keep those of us in those states, from the worst case option. There are still plenty of states where they aren’t paying attention to the spread of the virus. I’m glad we aren’t in one of those. But I certainly feel upset over those states’ actions, and I would even if I didn’t know family or friends living in them.

Anyway, for now, just keeping your family alive is the most important thing. Everything else can wait.

BJW

Well, impeachment was one of the legal remedies. Amendment 25 is one.The third is voting Trump out. Our founding fathers didn’t foresee that one whole branch of the government would allow the president to get away with everything, just because it was the same party. The governors can’t do it, although they largely control their individual states. I fear that the American idea of democracy is failing and that the US as a whole is on a decline. Every powerful country/empire has waxed and waned so I believe that is where we are as a country. This pandemic could’ve assured Trump of reelection if he had done it right, but he couldn’t stop thinking about the economy long enough. And none of his inner circle know enough, especially the ones that are influential. I hope I’m wrong.

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