We were excited about the carnival that our church was putting on because we had a great time at the last one and this one was going to be bigger and better! Landon loves a bouncy castle and is usually happy to stand near the bouncy castle and listen to the fan that blows it up. At the last carnival he stayed in one spot, spinning and jumping to the glorious sound of the high powered fan (he loves any kind of machine that makes a steady sound). We were stoked when we walked into the carnival yesterday and saw how many bouncy castles/blow up activities that were set up. Jason and Landon quickly found a good fan to spin by (he can spin for hours and not get dizzy) and I was able to take Adrianah into see some circus acts. After the show we came back out and I was happy to see that Landon was still doing well and was enjoying a snack. It's funny that I can get so much joy out of seeing him happily eat his fishy crackers at a crowded event. It had been an hour and we were still there! Things were going well!
Iphone pic from the carnival |
Reading that little story might not put into perspective of what it feels like in the moment. Before I try and explain I want to make clear that I'm not trying to make my son look bad and I'm not looking for sympathy. I could go on and on about his amazing side. My boy is a sweetheart and it's the autism that makes him act this way.
When I speak of a melt down for Landon, I don't mean a two year old tantrum where there's some crying and maybe some flailing. I'm talking ear piercing screams, punches being thrown and head butts to my nose. His meltdowns make other kids tantrums seem adorable. I usually tell people that it feels like I'm trying to keep a bomb from exploding at all times. Sometimes the clock is running down and I can see that I have 10 seconds before the explosion. I'm trying to figure out which wire to cut before it's too late. Sometimes, I'm lucky and snip the right one in time but more times than not...kaboom. You know in a movie when the hero walks away from an explosion like a boss? That's what I do at home, I mean without the hair blowing in the wind and cocky grin. I simply walk away and let him do his thing. He just needs time to get over it and there is nothing I can say or do that will speed up the process. In public though, I pick him up and leave. I strap him into his seat while he screams in my face and I drive home while he two foot kicks the back of my seat. It can make us completely forget that for the first hour, we had a great time. So that's why we usually don't go.
Years ago, before autism affected our lives, we were at a park and a family sat and ate their picnic lunch while their child was freaking out on the ground. I remember thinking that they needed to teach that kid a lesson. I had no idea what I was talking about. When I think of that family now, I have so much respect for them as they most likely were dealing with autism and they didn't just pack up their picnic and run away. We are not there yet. We are still sensitive to the many glares and stares that we get in public. I know I look like a crazy woman and a terrible mom when I am dragging Landon by his jacket into school sometimes. I've had people stop in their tracks and stare with their mouths open. There have been a couple of strangers though that have gone out of their way to tell me that I'm doing a good job. Those little words can really help. If you see a mother or father struggling with a strong willed child, be encouraging or simply smile. It goes a long way.
So there's another little glimpse into our life. Next time I'm going to brag about him. Tell you all about his musical talent and his sense of humor. He really is so incredible and I want everyone to know that side of him too.
PS. I get to take Landon for some shots tomorrow. I'm really excited about it....not. Pray for us.
You are incredible, I don't know you that well but whenever I'm around you I feel warmth calmness and peace. Landon has the perfect mom for him. Not every moment will be perfect not every choice will be right but your bond to your son is perfect. You inspire me to be better.
ReplyDeleteThankyou for sharing with us some of the experiences you find yourself in with Landon. The way you explain it, one can actually imagine what it must be like to be in your shoes! In fact you allowing us to see what Landys perspective might be also is such a gift! You are a much needed link into this seemingly new phenomenon called Autism that so many lives are affected by today. God bless you with much wisdom, peace and strength for each new day! Love you, mom
ReplyDeleteThank you so much for sharing, Esther. I hope we can all learn to be that supportive person for autistic children and their parents. I just read "Love Anthony" by Lisa Genova and the meltdown described in the book and in your blog are so similar. We all know fear of something we shouldn't be afraid of, or, have something important to us that gives us comfort that "everyone else" doesn't see that way. Maybe we can channel a little of those feelings towards the sense of order, staple comforts, and, please, no surprises, world of the autistic child.
ReplyDeleteReally touching... Thank you for sharing.
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