It’s a question I get asked often. What is it like to be an Autism parent? Well, it’s just like being a parent of a typical kid…wait, Seth is a typical kid, we’ve just had to adjust our definition of typical. But I know what they mean when they ask. I know, most of the time, it’s not in a mean-spirited way, just curious about what our life is like. Yeah it’s like parenting a kid without Autism, but there are some differences.
1. Be prepared for anything. When I say that I mean ANYTHING! Your typical brain cannot fathom what his Autism brain can. I constantly have to tell Seth he cannot fly. He really thinks he should be able to. When I tell him it’s a very serious thing. It’s not joke to him. It means I have to be on constant guard watching to make sure he doesn’t try to fly! A recent conversation between Seth and my 6-year-old Mack went something like this:
Seth: Dear God please help me to fly.
He jumps from the couch and lands soundly on the floor.
Mack: God said no!
Thankfully Seth accepts that God says no sometimes. It has not stopped his perseverance to learn to fly, but in that moment No was okay!
2. Wandering away is a real issue.
Kids run off. Kids hide from their parents. But Seth is a wanderer. He has no concept of danger. He gets curious and he explores. He doesn’t bother with asking, telling or anything. He just goes. He goes in the middle of the night when everyone is sleeping. He leaves the zoo petting area at the fair to wander off. He gets out of the van while at a stop sign and runs into a field. He is a wanderer. It’s scary and as of this day, no one knows what causes it or how to stop it. So we do what we can to prevent it. We have alarms on our doors, we are hyper -vigilant when we are in public and when we are doing something with a lot of people, I always take a picture of him so I know how he is dressed in case he wanders off. Wandering is scary.
3.He’s labeled before people meet him
People know my son has Autism. People have a general idea of what that means before they meet him, but people have no idea how amazing he is until they meet him. No he’s not a savant, and he’s not Rainman (although he has Rainman moments), he’s verbal and he is very sensitive. He has no social filter and he doesn’t care! He will burp, pass gas or any other thing that we all see as rude and not think a thing about it. He’s not being ill-mannered. He really just doesn’t understand the social graces that go along with these things…and he doesn’t care! We have taught him to say excuse me, but that’s about as good as it’s going to get! While he is not a savant, he is incredibly smart! He remembers everything! I mean EVERYTHING! He gets very exasperated with us when we don’t remember everything! I should start taking notes!
4. Every word you say to your child could be taken a different way!
Seth is a very literal child, most kids with Autism are. If you tell him it’s raining cats and dogs he will go to the door and look for cats and dogs falling from the sky. There are times when this is a fabulous way to view the world, but if you think of some of the other idioms we use in everyday language you can begin to understand why kids/people with Autism seem to be confused sometimes. I don’t think I could navigate easily in world where people saying things that confuse me. Think of living in Italy and not speaking Italian. Same concept. Here’s a few that always make me laugh when Seth hears them.
Barking up the wrong tree
Beat around the bush
Costs and arm and a leg (that’s a favorite around here!)
Hit the sack
Let the cat out of the bag (Seth would literally put a cat in the bag if he had the chance with this one!)
Once in a blue moon
5. Experience joy like you never imagined
All parents experience joy with their children. I think for parents who have kids with special needs joy comes in many forms. We don’t always get the typical milestones at the typical ages, so sometimes our joy in typical behavior is delayed. I find joy when my son goes to the bathroom independently and doesn’t try to flush the soap down the toilet. I find joy when he comes and gives me the biggest bear hug, almost to the point that I can’t breathe, because some doctor somewhere told us he wouldn’t be affectionate. I find joy when he dresses himself correctly. I find joy when lies to me. I know that one is a little odd, but I do find joy in it. Kids with Autism, typically don’t lie. They can’t. It’s too stressful for them. They have a very defined sense of right and wrong. So when he lies to me, there is a certain amount of joy in it. Of course I correct him and call him on it and tell him that lying is wrong, but it still brings a little smile that he’s trying to be a typical kid. Finally, the one thing that has filled me with joy most recently is when Seth participated in his school’s Winter Concert. He was on state with 500 kids singing, and do the action and movements to all the songs! My kids go to a small charter school and everyone knows Seth. They all felt that joy watching him perform! He was amazing! It gives me glimpses of what is possible. If he can stand on stage with 500 other kids and sing and dance, anything is possible! He just does things one beat behind the rest…but he’s doing it!
Being an Autism parent is different from parenting a “typical” kid, but in the end we all want the same things for our children. We want them to be happy, healthy, and be able to take care of themselves in a world that’s kind of scary sometimes. We are more alike than some thing. We just face some different challenges along the way!