As Autism Awareness month comes to an end, many autism families – in the midst of COVID-19 – are feeling more lost and alone than ever. This is not an easy time for ANYONE.

If you are not living autism, it probably hasn’t been on your mind this past month. That is certainly understandable with everything going on. But autism is never easy, and autism in the time of Corona is a whole new ballgame.

My heart goes out to everyone affected by this situation. To those suffering with and affected by the virus, especially those who’ve lost loved ones. To those who have lost their jobs or businesses, especially those struggling to feed their families. To those dealing with mental health issues, addiction, and loneliness. ALL of these issues are very real. And caring about any one of them doesn’t have to mean you don’t care about the rest.

To my fellow autism families – my heart is especially with you. Our kiddos our often forgotten, and it feels like their needs are almost completely overlooked while schools are closed. Don’t misunderstand – I do not mean by educators. I truly appreciate everything they do, especially for our special needs kids. They were thrown into this situation as well, working incredibly hard, and doing their best to support our children virtually. 

But missing out on school is a big deal for our kids. For many of them, school was the only opportunity for social interaction with other children. They thrive on routine, they miss their teachers, and virtual learning does not meet their sensory needs. 

It’s hard on us autism parents too. Many of our kids require 24/7 supervision. The time they are at school is the only time some parents can do ANYTHING else (work, laundry, errands, cleaning). I shared my friend Michelle’s post a few years ago that really highlights why we can’t turn our backs for a second. Many autism parents are up all night with sleep issues and seizures. For some parents, school is the only time they can sleep. Like ever. All of that is even more difficult for autism parents who are single, homeschooling other children, and/or working from home. 

I was going to share some pictures of why this situation can be uniquely hard for autism families. But, I’ll just share some of our own personal struggles. If you want to share your own, feel free to comment. 

My son Christopher, who has severe autism, does not understand this situation. He doesn’t really know why he can’t go to school anymore. Virtual sessions, especially for things like OT, speech, and ABA are not the same. I don’t know if he knows that the other kids aren’t in school either. I don’t know if he thinks he is being punished. I don’t know the questions he has that he can’t ask me. And I can’t reassure him that things will go back to normal, because I don’t know that either.

He is not getting all the sensory input he needs. So, he constantly ripping things. Books, mail, homework. This is an old behavior, but he is regressing in some ways. I gave him my shred pile, but I can’t get him to throw the shreds back into the box.

Our current situation here

I have been physically hurt. I don’t want to get into this here, but I don’t know if I could do this at all without my husband here to help. I am very mindful of the single parents dealing with unpredictable behavior. Christopher has been throwing a lot of things. We’ve had some electronic casualties. I know I’m not the only one who goes through this (my friend Dave over at I’m Simply A Dad has been through a lot of TVs). A lot of us will be cleaning up long after this is over. 

Another one bites the dust

I’m not trying to complain. I don’t want anyone to feel sorry for me. And I certainly don’t want anyone to tell me everything I should be doing differently. And I am especially not meaning in any way to minimize the myriad other major issues going on at this time. Those things are all important too. 

I’m simply sharing that I am struggling through this. And that if this is hard for you, you are not alone.
And to everyone else, I’m simply asking for kindness and understanding.

We should all extend this to one another if we can going forward. We can feel sympathy and compassion for those who are struggling in one way without sacrificing our compassion for others struggling in a different way.

And if we ever get out of this COVID-19 abyss, we can hopefully continue to have kindness and compassion for EVERYONE who needs it. And remember that families with autism are often struggling in ways you can’t imagine – during Autism Awareness month and beyond; during COVID-19 and beyond. And they, like everyone, are deserving of your kindness.