“I am sending home a list of resources to help your child to process the corona virus. Attached is a social story and a list of projects you can do to keep your child engaged in learning during this unavoidable break due to the corona outbreak. If you have any questions feel free to reach out to me be safe”.
As a parent I am sure that all of us have been met with this email. I am picturing those of us with children on the spectrum attempting to explain to our children why our calendar has changed or are scrambling to figure out how to quell the imminent melt down when their Saturday run to salvation army to buy DVDS that he/she doesn’t watch anyway has been cancelled or why their one food that they eat is no longer on the shelf. For many of those affected with autism there have been challenges that could, at least in part, be explained via social story, a slight distraction using minecraft or fortnite. But, what if your child doesn’t talk? What if, as a parent you are standing there watching your son/daughter stare at a calendar as they moan and rock back and forth and you know there is no explaining it to them?
What if you reach out to a BCBA or another therapist for help (because therapy is also on hiatus) and you are told “we can only remote in” as your child lays screaming on the floor biting his hand. You decline knowing there is nothing they can do to help you, at least in the moment, because the consistency is gone and you have no reinforcement strong enough to counter the overwhelming feelings your child faces as their most looked forward to events have been taken away and they can’t understand why. The teachers’ email runs through your head and you begin to feel a sense of anger in the moment as you think to yourself “A social story? really? yeah right” as your child continues to spiral downward and there’s nothing you can do to stop it.
For many of us with children on the spectrum, it is not the isolation that is getting to us we are used to this. We have spent many days in our homes separated from the rest of society. What is getting to us are the expectations that we are like the others. The “just talk to them in a way they can learn” subset of those on the spectrum. (I do not come in anger but rather with an intent of education)
A social story wont work with my kid. Moving the outing to the next week but going twice instead will not help my kid. Your list of things to keep my child on track while school is not in session will not help my kid. These things, while done with the best of intentions, inadvertently make it worse for some of us.
What then, will make it better? As I have spent the last many nights while this quarantine has been in effect with a restless, anxious, biting himself and oftentimes flailing child long into the night I have to wonder where the help is for those of us battling the helpless end of the spectrum. Here is what I have found lessens the impact. I can’t say makes it better because that would not be reality but hey sometimes anything is everything.
First off, that social story, if it makes you mad, allow the anger. Print that crap out tear it up and throw it away if it makes you feel better. IF its useless to you, its useless to you. Hey, made me feel better anyway.
Second, look at your kid, Therapy is not there (I know right, FREEDOM), here is your chance to just be mom/dad. Let your child flap, let your child watch the same 5 seconds over and over (while you wear the noise cancelling headphones for once). Keep your child safe but allow them to just be. This is your chance to reconnect. There are going to be crazy hard moments. Allow them. This is your time to let your child freely roam which means, you are learning about your child with no outside forces to structure their behavior. You just may, for the first time in a long time, be seeing your actual child not the muted therapeutic version. Why is this important? Because in watching your child freely roam you are learning more of what fuels them which can be very very motivating in therapy.
Third, the world doesn’t get it. It wont get it. Even the majority of the autism community won’t fully get it the severes are the forgotten about tribe because you won’t see us at the autism friendly outings, our kids can’t handle it. (again no anger in this statement but its the reality). Which means, yeah, we are kind of on our own, but then again we are not. It feels that way now, because the supports we had in place are no longer available to us so its kind of a shock to the system, but at 2 am, when that flailing, screaming, hand biting beautiful child finally succumbs to the effects of the medications your doctors promised would help open your laptop there are others there taking a breath just like you. Taking in the few hours of silence knowing they should be sleeping but this is their only chance to reset and connect.
Fourth, try to look at the bright side. I know, I know, this is hard as your child is laying on the floor screaming and all those things the teachers sent you as “tools to keep your child on track” are running through your head. As long as your child and the environment are safe, remember that this is a normal though taken to the ultimate extreme reactions to disappointment and fear. No pressure. No one is standing over you telling you how to respond. Sometimes, I have found that allowing the behavior, as long as its safe, has actually lessened the behavior in the long run. Kids on the spectrum dont regulate like we do. They need more time. Think back to the last time you just wanted to scream, Maybe you allowed it. Screamed into a pillow for twenty seconds and felt better. Now multiply that emotion that made you scream by 1000 and add to it your inabilty to regulate. Now, you need to scream for five minutes to have the same effect. Thats kind of how autism works sometimes. Sometimes we need to just let things play out I think. Its how we grow.
In closing, to all my caregiver friends of those on the severe end of the spectrum I get you. I understand. Let the pressure go. Enjoy your kid. Let them be. Look at this as a “typical break”. Laugh at the posts from those “typical parents” as they try to process this isolation that we have been doing for many years and will be doing for many years to come. We have already mastered this. What we haven’t mastered is having people in this with us. I guess you could say, to us, “It’s too peopley in here”.