The way in which autism affects people varies like the colors of the rainbow. Each version different from the other. As the saying goes, “If you’ve met one person with autism, you’ve met one person with autism.” That meaning, any previous experience with autism may mean absolutely nothing when you meet the next person on the spectrum. Many times there are in fact, common ‘quirks,’ but there is no cookie cutter version. To have a relationship with a person on the autism spectrum, you must take the time to get to know them – just like everyone else. It would seem silly for someone to say “I’ve met a kid, so I know all about kids. I completely understand your child.” But people are quick to think that since they know one child with autism, they ‘get’ all of them. Not so. Many times, well meaning people will say things like- “My cousin’s kid has autism” or “I use to babysit a kid with autism”- that meaning that they ‘get’ Ethan. They don’t. But you know what, I appreciate the effort and support. So does he.
But does he really appreciate it? Does he understand? How much does he understand? When a child with autism has a language delay (not all do), it can be challenging to determine what they know compared to what they express. There was a period of language loss with Ethan. His primary language became visual. We had velcro dots and pictures ALL over our house. ALL down the walls of his hallway you would find his schedule for the day. I spent ungodly amounts of time either finding the ‘right’ pictures on the internet or posing him around the house or on location at his usual places…you know…like speech, OT, PT, ABA…all the “FUN” things a young child should have to deal with. (Sarcasm intended) So each morning, many hours before he would get up, I would prep his wall for the day. If he could see what he was doing for the day, he would feel like a part of it, rather than a victim of it. I use the word victim, because many every day type things were horrible for him. A trip to the grocery store meant the buzz of the lights; the hot produce area with funny smells, met by the cold fish counter. The sounds of crying babies or voices on the loud speakers echoing through the store. Just a trip for food could trigger a melt down. Melt down=Hell. So you plan, plan, plan….prep, prep, prep. Planning and prepping = survival.
Unless you have been through it…every day…for years…there isn’t a really good way to explain it but to say that every autism Mom has earned the right to utilize any coping resource that she can find for herself. Some start drinking..heavily. Some pop pills to cope. Some find Jesus. Whatever they find, it many times becomes their ‘focus and mission.’ Some Moms stay home. As in, they do not take their child in public. This breaks my heart. At one point I knew a family that had a child with autism and a couple other children that were typical or ‘normal.’ Their answer was to have a Nanny for the normal kids and a Nanny for the little one with autism. The child with autism was never out in public with the rest of the family.
An autism diagnosis is the death of the dreams for your child. There is a mourning that occurs as the grief sets in. Then the reaction comes. How will you respond to this diagnosis? Our response was to fight. We fought for Ethan and for our family. We have spent many years fighting for other children and families as well. To this day, if Ethan shows fear toward something, I make him address that fear. It is ok for him to dislike something, but I will not let him fear anything. I will not let him hide away. At almost 11 years old, he has caught on to my methods. He now rarely admits fear to me. He will simply say “That movie trailer does not appear to be appropriate for kids.” He cracks me up! He’s not afraid, it just isn’t appropriate. 🙂
So I came across another autism blog. You can read it at……
The blog autism Mom says things like, “I stand quietly at the supermarket checkout while everyone stares at you barking like a dog and blowing raspberries on my arms to cope with the buzzing lights.
I stand quietly while you tell the baffled shop owner that you are looking for shoes that feel hard like splintered wood because your skin can’t bear soft things.”
The part that REALLY caught my eye….“*Three months of non-stop bad days and counting, not left the house since December 3rd 2014”
My heart said, “No, Mama. Don’t hide.” I wish I could go to her house and help her. I wish I could show her how to use PECS and the laminator. I wish I could tell her that becoming PR for the World can help get her child excited, just enough, to dare to leave the house. I wish I could tell her what I wish I had heard so many years ago…”It CAN get better. There is hope. If you push, you can do so much more than you could ever begin to dream right now.”
Ethan is approaching his 11th birthday. For some reason, this year he is having a hard time deciding what he wants to do for his birthday. Tick, tock… it is almost here and we have NOTHING planned yet. But I think I know why now. This morning he started asking me about a previous birthday. “Mom, where did I have my 2007 birthday party?” Remember, he is a calendrical savant. Dates matter…a LOT. I said “Chuck E Cheese I think.” I wanted to answer his question and keep it moving as we were rushing to get out the door to school. “No it wasn’t at Chuck E Cheese. It was at our house.” Ahhhh….my savant is right. “Yes! Thats right! It was in Alabama. The house was full of friends and family.” Then Ethan’s face went a bit dark. He was thinking. I waited, wondering what in the world he was thinking. Finally it came. “That was a tough birthday Mom. Why was it tough? Why did I cry? Why was it like that?” At this point he had tears in his eyes. Forget being on time today…again. I stopped and tried to choose my words carefully. “Ethan. That was when the autism was really hard for you. Things were always too loud and scary for you. Too many people in our house scared you. All of it scared you. But remember, God has been so good to us, and to you. God has helped you get through the toughest parts of autism. It will never be like that again. Do you also remember that every birthday since then has been better and easier?” He thought and agreed that it had gotten better each year. I am still amazed at the clarity that he can remember and express to me his own heart ache at what he has been through. I reminded him, “God is taking care of you. You don’t have to worry, I promise.” Trying to turn the conversation to a lighter note “So Ethan, have you decided what you want to do this year? We need to choose quickly so we can make plans.” His response was so sincere. “Mom, I just want to eat, have cake and have fun.” What a Great answer! We will eat, have cake and have fun. Still not sure when and where, but we will work on that. We will leave the “Big Stuff” in God’s hands. He has got us…I Promise.
Not Quite What I Ordered 