Every time I talk to someone about Killian and how he has been diagnosed with High Functioning Autism, I get the same response. “Oh, but he seems just fine.” “Really? He seems like a normal 4 year old.” “But don’t all 4 year olds act that way?” “He’s fine, he will grow out of these behaviors.” And so on and so on.
You say that all kids have a hard time touching the inside of a pumpkin when carving a jack-o-lantern. You say that all 4 year olds have an attitude and tantrums. You say that all boys are hyper. You say that he talks just fine.
I want to tell you this.
Stop. Just stop.
I don’t need to hear your skepticism. You have spent 5 minutes with him. I spend 24/7 with him.
What you don’t know is that it took us an hour to help him touch the pumpkin guts. It took hand-over-hand to get him to do tiny finger pokes into the gooey mess. We held our son as he screamed and cried because touching the pumpkin innards caused his whole body to “shiver” when he touched it. You didn’t see the patience my husband had when creating elaborate stories about having to do surgery to save the pumpkin and needing to fix its heart. You didn’t see the mental exhaustion and frustration we endured to just have him stick his hand in a pumpkin.
What you don’t know is that for a year, he has been working on touching different textures and being able to just finger paint without the sensation hurting his body. What you don’t know are how many occupational therapy sessions it has taken for him to be able to accomplish this small act of a “normal” childhood.
What you don’t realize are all of the meltdowns we endure on a day-to-day basis. More than they typical toddler. I bet your child doesn’t scream and cry and tear away at his clothes because he got a few drops of water on the sleeves of his shirt while washing his hands. Or how I can’t take him to the splash pad with his friends to play because water got on his swim suit and having the clothes stick to his body causes him so much anxiety that you would think the world is literally coming to an end all around him. That he will have sudden bursts of emotion that don’t pertain to the situation he is in and become angry at everyone around him because they don’t understand what he is feeling or why it is happening.
You don’t see how he can be so calm and mellow and out of nowhere he is throwing his arms around while flicking his fingers together, kicking his legs, and yelling random sounds. You don’t feel his limbs hitting and kicking you so suddenly that you have no time to react and block the advances. You have never seen how he runs at full speed and crashes into the nearest object or how long it has taken to get him to only crash into soft objects like a bed or couch instead of the wall. You haven’t been tackled while doing the dishes by him because his body “felt like it was going to explode” if he didn’t get that hard pressure hitting his body.
You hear him having a conversation with you and using big words., but have you actually stopped to realize that he is only talking to you about the subject HE chose? Have you noticed how he won’t look you in the eye when he talks to you? Or what about the fact that he acts completely oblivious to your existence if you bring up a topic he has no interest in. And I’m sure you still haven’t noticed that if you initiate a greeting then he will get angry and growl at you, despite the fact that he was just in the happiest and friendliest mood.
What you don’t realize when making these comments to parents of kids who “look fine” on the outside or are having a good behavior day, is that you negate everything we have worked so hard for. You remind us of all the doctors who have told us that there is nothing wrong with our kid even though we know there is. You are basically telling us that we are overreacting and causing more stress and chaos in our lives than there really should be.
We have fought so hard to get to where we are today. We have gone through hours and hours of testings with specialty doctors, therapists, and school educators. We spend more time trying to help our kids succeed in the simplest tasks that to your kids has come so naturally. I’m sure your 4 year old can tell you he needs help. Mine can’t do that on his own. He throws the object and screams that he can’t do it. We have to tell him that when he can’t do something on his own that he has to ask for help. We have to coach him on how to ask for help. He will be 5 in 3 months and still has to be coached every single time. Not just here and there. Every. Single. Time.
So please. Before you start trying to tell me that you don’t think there is anything “wrong” with my son, think about how you are only seeing a tiny glimpse into our life. Remember how hard we, as parents, are struggling and fighting to make what you are seeing, an all-the-time occurence.
We really don’t need more people in our lives throwing skepticism our way. We just want to know that you care for us and will support us, even if it’s just with kind words.
-The Lazy Mama