Thursday, January 29, 2015

The Reality of Autism Can't Be Captured in a Picture


What does this picture show? A 5 year old boy, our son, Dayton. No, he isn't praying. He's crying because I made him take his medicine and then told him that he couldn't dissect his sandwich. That's all it shows, and this is what people see. He doesn't have any physical handicaps, he has all 10 fingers and 10 toes. But what does this picture not show?

This picture doesn't show that he doesn't talk. It doesn't show that he is still in diapers and we don't know when he will potty train. It doesn't show that his shoes are all worn on the front and the tips of his toes are calloused because we walks on the balls of his feet constantly. You can't see that he is wrestling with things in his mind that we can't help with, because we don't know what those things are. It doesn't show you that he doesn't play with toys as they are intended, instead everything becomes an object for him to stimulate his sensory system with. Cars get spun, books get tapped, and blocks get chewed. It doesn't show that he rarely will use a utensil to eat, instead he uses his fingers. It doesn't show that every meal is a fight that I dread to take on.

This picture doesn't show how we as a family have had to mold our lives around him and his needs. It doesn't show that he didn't get to go on a cross-country family vacation, because it would be too much change for him. It doesn't show that we've opted out from going to most family events unless they are at our house, because he gets too overwhelmed and either melts down, throws up or breaks things. You can't see that our weekly schedule is planned around his occupational therapy, speech therapy and psychiatric appointments. It doesn't show that we've given up our entire basement so that he could have a therapy and sensory room. It doesn't show that his two little brothers struggle to understand why their big brother won't play with them.

This picture doesn't show my frustration as a mother. It doesn't show that some days, as much as I love him, I struggle to like him. It doesn't show that I've cleaned his poop off his walls, floor, toys, bedding and himself more times than I can count. It doesn't show that in order to get him to take his daily medicine, I have to hold him down and force it into his mouth. You can't see the tears that I cry as I struggle with my thoughts about whether adopting him was the right thing or not, and the guilt I feel from even letting those thoughts cross my mind. It doesn't show how angry I get when someone tells me we've done a great thing by bringing him into our home and that I'm a saint for it, a saint wouldn't feel the way I do at times.You can't see how difficult it is to try to show affection to a child who rarely wants you to hug them and would rather be by himself all day. I'm the enforcer of his rules and routine, and he doesn't like me. It doesn't show how badly I wish that I could break through his glass wall so that we could get through to him and see him continue to develop. It doesn't show how I want to cry when people ask if therapy is working, I keep saying it will eventually and that the process is slow. You don't see how much I want two days in a row to be the same for him, instead of constantly changing.

This picture doesn't show my disgust for the system. It doesn't show that he had to be labeled Autism Spectrum Disorder with Developmental Delays, without the delays insurance doesn't like to pay for things. It doesn't show that for him to get the behavioral therapy he needs there is only one solid provider within a 5 hour distance, we've been on that wait-list for nearly 2 years. It doesn't show that every time I get a phone call from his school I cringe, scared to know why they are calling. Knowing that if I have to go get him, I'm not getting my only break in the day from him. You can't see that everyone we work with is always playing a guessing game with what to do next for him.

I rarely write about Dayton, because our days are usually filled with frustrations, and no one wants to hear those. Everyone just wants to hear the happy anecdotes, and we only have a few of those. I'm not writing this for sympathy, everyone has a sad story of some sort. I'm not writing this so that people can tell me everything will work out, no one knows that. I'm writing this to get out of my own head. We are currently going through the roughest patch we have thus far. I want people to know that a life we a child with Autism isn't always sunshine and rainbows, and it's a tough pill to swallow. I wish I could be one of those moms that is raving about how special their special needs child is, but I can't.  And I know that HE is special, but he is clouded by his disorder, and at times it is hard for me to see past it. I feel like I have constant heartache, and I know it isn't his fault. I know he didn't ask for a life full of obstacles. As difficult as he is to deal with, and I worry about his future, I know that when I look back in 20 years on this difficult period in our lives things will have improved. I do not know how, but in my heart I know they will. We just have to weather the storm, as difficult as it is.



2 comments:

  1. Your story made me sad for you. No wonder you need your respite every month! We will continue to pray for you and your family.

    ReplyDelete
  2. Olga brought me here (we are co-workers) and wanted to share your post with me because I have a soft spot in my heart for children with autism. I used to be a behavior therapist and worked with a lil' guy just like your Dayton. In fact, I felt like I was reading about the young boy I worked with. I started working with him at the age of 2 and stopped when he was 6 and we sent him off to preschool. We did so much therapy and I know how stressful it was on him, his mom, & family. He is so lucky to have you and it sounds like you are so lucky to have him as well even if you don't "like" him some days :). Mother's like you are the advocates these lil' guys need in the world. Keep on doing what you do, it sounds like your doing an AMAZING job.

    ReplyDelete