I’ve about had to stop going online as I see people commenting that they can’t handle their kids being out of school for a few weeks, or how difficult it is because they can’t go to a party, vacation, etc. I’m sure almost any parent with a child on the spectrum could tell you stories…but I didn’t want to turn this into a “so you think you’ve got it bad…” That doesn’t do anyone any good.
Instead, I want to spend a few minutes sharing what we’ve learned over the years of how to handle change when change is your enemy. How we’ve survived before, and how we’re doing it now. Maybe this can help you and child even if they’re not on the spectrum. And if you know someone who recently got a diagnosis, and they feel like they are drowning – send them this link, so they can learn how to manage. Because we all go through it, but sometimes it’s hard to see the forest through the trees.
A Little Background
People on the spectrum like their routines. In fact, “like” is a weak word. Any disruption to their routine, can be the cause a breakdown. We’ve written before about how a something minor like the garbage men missing our street caused a horrible episode where my son was sobbing because his routine got interrupted.
Additionally, people on the spectrum tend to have communication issues. They may not understand why others are upset or worried, but they can feed off of these emotions. Unfortunately, sitting down and talking to them about the virus and what to do may not work – as they may not be able to process that information. This is similar to a small child – in fact, we’ve been told out oldest communicates at about a 1st to 3rd grade level depending upon various factors.
Because we’ve had to deal with issues of change for nearly 20 years, my wife and I have (unfortunately) become masters at handling situations like this. So let’s tell you what we’ve seen change, and how we’re handling it.
So What’s Changed?
We live in a small town, where I teach at a local university. And while we’re not on curfews, or mandatory lock-down like some places, it doesn’t mean that we aren’t affected. My classes have moved on-line and I’ve been teaching at home instead of going on campus. Local restaurants are closing down, and while food and paper goods are still on the shelves, they are not as abundant as they have been.
Add to this, my father has been ill (unrelated – but important as that meant we couldn’t meet for our normal Tuesday dinner with grandma and grandpa), and my eldest had his 21st birthday this past week. For his birthday he wanted to go to the zoo, which he did, and go to Chick-Fil-A. Unfortunately, they were the first nationwide restaurant chain to close their dinning room – the first day that it went into effect, was his birthday.
My in-laws looked to be coming up for a short visit and to get some help with something, but that fell through due to various reasons.
To top this all off, a student at my school tested positive for the COVID-19 virus. While I did not have direct contact with the student, due to how students move about a campus, we have to be careful for a few days until our window passes. Which means more trips outside the house are cancelled.
Finally, our church, like so many others, is heading the CDC’s warnings about no groups more than 50 in size – and they have canceled public services.
Every time he would mention something that was scheduled to happen, we’d have to tell him that it couldn’t happen right now. He looked in at us with such sad eyes, afraid he had done something wrong.
The final straw was when he said he wanted to go back to school, and we said he couldn’t for at least two weeks, maybe longer. People often think of autism affecting young kids, but they forget that those young kids grow up and become autistic adults. Here was a full sized, 21 year old, who was getting ready to cry because he couldn’t do the simplest of things he has done for years – like go to school.
Many kids out there are like that, even those not on the spectrum. They don’t really understand what is going on, and can’t do what they normally do. They are scared, confused, and barely hanging on, and only one thing away from breaking down. So what can you do to help them?
What we are doing
We’ve learned over the years that, when change happens, you best have a plan. My wife and I didn’t even think about it, we just started executing our plans to manage the situation as best as we can. It’s become second nature to us.
I want to tell you what we’ve done. Use it as a guide to help move your own family forward, or maybe yourself.
First, we keep, what we can, the same. For us that means assigned chores are still carried out. Every day my eldest helps take out the trash and gets dirty clothes to the laundry room and takes the clean clothes up stairs.
It also means fun things like watching a family TV show are still on the docket. (Right now we’re watching the classic The Incredible Hulk as a family.) We are prepping our garden, and all those things are still being done.
Second, we distract where we can. Sure we couldn’t go out for dinner with Grandma and Grandpa like we do every Tuesday. But we distracted them with pizza at home instead. It’s a special treat, they only get once or twice a month – so now was a time to bring it out.
Third, we provide alternatives to activities. We can’t go to the store as much, but we can go to the zoo because it is more spread out and people aren’t as close. We didn’t go the park, but we played outside in our yard, because fresh air and sunshine are good for you. We aren’t able to go to church, but we are going to watch it online.
All of these activities we are doing as an alternative to keep them on a similar schedule, and with as similar experiences as we can.
Fourth, we bribe when necessary. No birthday dinner with cake because of the illness and we had to postpone, but how about cake later, but brownies now… You’re being good today, how about we make some cookies together… With our boys (like most teenage boys), food is a great tool for bribing and rewarding them. We’ve also watched a few more family movies than normal, including Frozen 2, Spies in Disguise, and Jumanji: The Next Level. Normally we’d do a movie a week, but we did more this week…and that’s OK.
Fifth, live and laugh when you can. You cannot focus on the negative. They may not understand it, but they can pick up on it. So we laugh, tell jokes, and turn off the news. We need to be prepared, not paranoid and depressed.
Finally, sometimes we just hold them and cry with them. When my eldest found out he may not be returning to school, his lip quivered. He was trying to hold it together, but was a second from losing it. He fell onto the bed, and buried his head in the pillow. He didn’t want to fall apart and have a meltdown, no autistic person wants to have a meltdown. That is the last straw when their world is falling apart.
I grabbed his weighted blanket and laid down beside him, holding him. I talked calmly to him, and let him know that we still love him and that he didn’t do anything wrong. I stroked his arm as he finds that calming, and stayed with him until he was doing better.
When their world is crashing in around them, sometimes that is the only thing you can do.
We don’t know what the future holds. We hope that this virus runs its course quickly and within a few weeks we will only be looking back upon this time and be glad it’s over. But we could be in it for several more months. No one has a crystal ball and can say for certainty. Until our lives can get back to normal, we will focus on keeping things as normal and ready as we can for our boys. Hopefully these tips will help you and your kids as well.
