I wanted to take a moment and share something that happened last week…
But first, I want to start by saying that I know how lucky I am.
My boys are Autistic. Chances are you know someone who is Autistic. The current rate of Autism is 1 in 44. Think about that. 1 in 44. I heard last week that, due to teacher shortages, our local elementary schools will have 40 kids to a classroom. That means, statistically, there will be one child with Autism in every classroom. I was reading an estimate that by 2025 the rate will be 1 in 2. That is still sinking in.
Why am I lucky? Chances are when you think about what you know about Autism, whether that be from stereotype or personal experience, what you picture isn’t pleasant. You might picture stimming or objects being lined up. You might picture kids who can’t speak. You might picture a child having a meltdown. You might go a different direction altogether and picture a brilliantly artistic child, the math genius or musical savant. But, let’s be honest, most people don’t picture the pleasant side of Autism. They picture what they’ve seen, the public meltdowns. This is where I consider myself lucky, if that is even the right term. My boys don’t tend to have public meltdowns.
Don’t get me wrong, they have their meltdowns. Boy, do they! They just tend to hold it together long enough to have them at home, geared toward us. In a place where they feel safe and are with their people. I consider this lucky because I typically don’t have to deal with the world watching our absolute worst moments.
Don’t get me wrong. I get it. Those who see Monkey get mad and take a swing at mom, they don’t see a child with Autism. They see a little boy not getting his way and behaving badly. People see Mr. Man stimming, something he seems to be doing more and more as he gets older, and they don’t understand what he’s doing. It looks strange, if you aren’t use to it. I get it.
To put it simply, most people don’t know how to respond or interact. I get that. Funny thing is, that not knowing how to respond or interact is EXACTLY what my boys struggle with in every single situation. Most people will try not to make eye contact or avoid us. I get it, it’s fine. I honestly prefer those who ignore us to those with the made-up PHDs that try to bestow us with their genius advice.
He just needs a hug (Um….sure if I want to get punched in the face.)
Really, he needs consistent discipline (Oh, they have PLENTY of that. Consistency is our life!)
He really needs less screen time (I am sure he does, but sometimes I just need to get something accomplished without a fist going through a wall. I guarantee he has less screen time than you think).
All this to say, we all know Autism can be hard, we’ve gotten use to the stares, we’ve heard the mean and unnecessary comments.
But back to last week…
We were at church. There has been a change to the teachers in the boys’ class. A necessary change, an understandable change, but all change is hard. Monkey was struggling with the change and seeking comfort. In that situation comfort was his brother. Mr. Man didn’t want anything to do with his little brother in that situation and they began to fight. We have been working really hard to get Monkey to understand that if he is getting frustrated with a situation, he can walk away. We clearly need to go back and clarify that because he walked out of class and came to find me. He crossed in front of a woman sitting near us to get to me. Later, after calming him down, I took him back to class. About 10 minutes later, I see one of the teachers walk in. Knowing she was there for me, I get up to leave and catch the woman’s eye as I walk past. Monkey is clearly not able to stay in class and we walk the campus for awhile, stomping on ants (great for anger) and chasing birds.
Eventually, we end up sitting back in service. Headphones in place, I thought we’d be fine… it’s always fine. Until it wasn’t. Monkey decided he wanted my phone. He’s been using it to type to me when he is too upset to talk. I got a lot of angry emoji’s and a few bad words. Then, he decided he was going to play a game. Not wanting to set the precedent of leaving class to play on my phone, I quietly told him no and took my phone. Wrong choice. You see, telling Monkey no isn’t allowed.
I spent the rest of the service keeping him quiet as he either flailed on the floor (a moment in which I wondered to myself at exactly what point in life I had given up on the idea that the floor is dirty) or repeatedly bit my arms. Again, eye contact with the woman nearby. This time, I was the one to quickly look away as I attempted to hold back my own frustration and tears. Church ended and we exited, post haste. I handed Monkey over to my husband so that I could use the restroom, knowing I wouldn’t get another chance until we were all safely home and calm.
As I left the restroom, something happened that I haven’t had happen in ten years of being an Autism parent. The woman who I know was watching the whole episode walked up to me and gave me a big hug. She said these words, which I will never forget, “I don’t understand. I don’t. But I see you, and you are doing great.” Full of frustration and covered in bite marks, I let the tears fall.
I have heard the rude comments, the mean comments, the comments that come from people who can’t understand. But NEVER has someone told me, I don’t understand but I see you and you’re doing great.
Being an Autism parent is isolating. Most of the time we prefer NOT to be seen, because the world isn’t kind. But knowing, in our lowest moments, that we ARE seen and that somebody understands that we are trying our best, even if they don’t understand the situation. That is a priceless feeling.
For those who are uncomfortable with how to respond to us when our kids are having a hard time. Just see us, just now we really are doing so much more than you see, but above all… just be kind. It does so much more than any advice ever will. Just be kind.