“Mommy, my brain feels like scrambled eggs”. That was the first time Weston was ever able to verbalize to me how he was feeling after an intense day. Nothing that day was going well for him. The house was too loud, the sun was too bright coming through the curtains, his clothes were too scratchy. He had all of this stimuli that he processes so differently than you and I and he just couldn’t regulate. When days like this come up, one of two things happens. He either shuts down and gets into the smallest, tightest ball he can manage, or he completely melts down. We usually don’t know which way it will go and it feels like you’re watching a bomb. You know it’s going to go off, but you don’t know when or how bad the damage will be. It’s usually a meltdown. From the outside looking in, it looks like he’s throwing a fit. Screaming, yelling, kicking, wailing and gnashing of teeth. The thing is though, he’s not throwing a fit. He’s doing whatever he thinks will help his body regulate and process all of that stimuli that is pouring in. Think of a cup. When you pour water in, it can only fill up so much before it spills out over the top. The same thing happens with us. The difference is, we know that we can’t kick and scream in public, so we click our pens, twirl our thumbs, or tap our feet. But because he doesn’t understand that socially it is unacceptable to act that way and that there are other ways to counteract those feelings of being overwhelmed, he does whatever he feels will work. His brain doesn’t know any other way. That is why I’ve learned to have so much grace and offer support when there is a kid screaming in the store. Guys you just don’t know. Yes, they may be throwing a fit because they didn’t get their way, but they may be fighting a battle that you can’t see. It’s not our judgment call to make and I can testify how utterly gut wrenching it is when someone comments about him throwing a fit and needing a spanking. This has happened, from a stranger. It took every ounce of my own self control not to ram my basket into her ankles. But trust me, even if you don’t say anything, that mom sees your sideways judgmental glances and pursed lips. She sees you, and she wishes you couldn’t see her. That was a little off topic, but just give grace guys. It feels embarrassing and there will be a day when your little one makes you want to disappear in public so be encouraging instead of annoyed.
I really wanted to talk about Weston’s perspective on his Autism, so I asked him a few questions. I wasn’t really expecting much because although he’s gotten better at verbalizing his emotions and feelings, we still don’t get much more than a stare and a shrug of the shoulders. I was really surprised by some of his answers though. I asked him how he felt when we first told him he had Autism and he just said he was sad because he already knew he was different than the other kids his age but he didn’t know why. The thing that upset him the most in the beginning was that he would have autism forever. Talk about heartbreaking. I didn’t want to go any further because ignorance is bliss I guess. I pushed through though and I’m so glad I did. He said sometimes when he is playing with his friends, he gets really irritated and can’t control his “angry” when he asks them not to do something or to stop doing something and they don’t. Ya’ll that was his ONLY answer for what challenges he thought autism brought him. I really expected to hear all about his sensory issues with things being too bright and too loud, but nope. He doesn’t like that he has a hard time controlling his emotions around his friends. He gets worried that he hurts their feelings or upsets them when he has outbursts. Guys that’s empathy and that’s HUGE for someone with autism.
He made it a point to say that he thinks his autism helps him remember his schoolwork better. He attributes his ability to learn and remember all of these crazy facts to his autism too. **Quick side note: his favorite fact is that there are turtles that breathe out of their butt. He will tell anyone who will listen and he wanted me to write that down**. I talk a lot about the challenges that he faces, but it’s important to me that you know it’s not all bad. The creativity he has blows me away. He looks at things so differently than we do and he usually applies things that he is fixated on into everyday life. When he’s hungry he will tell us that his hearts are low (like the health hearts in his video game). When he’s hurt he tells us that his health is low and he needs a med kit. Usually a Band-Aid or a kiss will suffice. We were always told that he would struggle with abstract thinking and in some areas he does, but when it’s something that interests him, abstract thinking becomes a breeze. We’ve learned to use that to our advantage. If he needs to eat more at dinner all we have to say is that he will get extra hearts if he eats a few more bites and he does it. It’s all about creative thinking and strategy with him.
I did ask him how he felt when situations came up that caused his sensory issues to come out. He doesn’t like loud noises or bright lights. As he’s grown older, the level of reaction has decreased, but it’s hit or miss. Sometimes he will be fine, other times he needs Travis or I to cover his ears or head. Worship service on Sunday mornings is usually the worst time for him, but even then he’s learned to cope. He said that when he gets in his little ball and I have my hands over his ears or he puts his headphones on that he thinks about “sorting things out and working on his projects”. He’s learned to cope with things in a more socially acceptable way and he just distracts his mind from it and focuses on something constructive. We never taught him that. It’s something he’s learned to do on his own as he’s gotten older. I know as he gets older he will have to learn to cope without distraction, but it’s one of those areas that we will cross that bridge when we get there. In the meantime we work diligently to teach him little things to help him get to that goal. I cannot begin to tell you the many doors that God has opened for him. Things that should have been such a struggle, God has shown us an avenue that makes it easier. When we know something new is coming up God always seems to take care of it before we get there. It has been amazing to sit back and recount all of the things He’s done for us over the last several years. He’s worked insurance issues out in a few days when it should have taken weeks. He made a way for me to be able to homeschool him and it not be as difficult as we were told it was going to be. He put people in our lives that have walked this road and can offer so much advice and testimony to what worked for them. And ya’ll he gave us this amazing tribe of people who see Weston’s heart. The openly embrace him and all of his quirks. They accept his one thousand and twelve hugs he wants to give when he sees you. They pray for us and send us words of encouragement when they know we are going through weeks of long days and little rest. They correct him in a way that doesn’t break his heart but sets him on the correct path. They love him. That has been of the most value to us.
I really expected a more negative viewpoint from him but he sees everything through such a positive lens. It absolutely blows me away every single time. We have talked and discussed that God created him to be exactly who he is, autism and all. He knows that he is so much more than a disability. He knows God created him for a special purpose and regardless of what might come up, God knows what He is doing in Weston’s life. Obviously he’s grasped that more than I have because as a mom, I still struggle with packing that uncertainty back on my shoulders. That’s something I try to work on every day. Sometimes I fail and sometimes I’m able to hand it over to God the moment the thought creeps up. I’ve had so many people ask if they can pray for healing over Weston. I’m one hundred percent ok with that and if that is what God chooses to do in his life and I truly believe God is a healing God, I would be elated. What a testimony that would be! But I also know that if He chooses for Weston to walk this out the rest of his life that He will be faithful to continue to open those doors for him. He will continue to provide a way when we see no way. He is just amazing like that. I know there will be more scrambled egg days, but I also know that he will get through them. He works hard and he believes wholeheartedly that God created him for something big. I believe that too. Even on the hard days I choose to have hope and believe that God will use Weston’s experience to help others on their scrambled egg days.