A recent conversation with my mom prompted me to write this post. I can't explain it, but I feel like a ton of bricks have been lifted off my shoulders. It's because now I KNOW for a surety that she's on board. I think I can compare the experience like an awakening of sorts. It's rather amazing, actually.
There are certain things that people can't imagine. One thing is motherhood. There is no way to explain it.... you have to experience it. The same goes for autism. It's a whole different world. When you know someone who has autism the world is no longer the same and it also changes you. I know, personally, I have gained more patience and more understanding. I have also grown to LOVE children with disabilities. Although my child's condition is not as severe as Down Syndrome or other children with low functioning autism, I look at those children and I understand them. I think I even appreciate them. It's hard to explain. One reason might be that my religion teaches that children with such disabilities are such special spirits that they cannot sin and therefore don't need to be baptized. They come to earth to experience a mortal body and that is all they need to progress in the next life. I think that is such an awesome teaching of our church.
If you are a friend, a family member, or an acquaintance of someone who has a child with autism then you have a glimpse of what I am talking about. However, you don't really KNOW what it's like to live day to day. You don't see the tantrums, the meltdowns, the overstimulation, or frustration that comes with autism. My child is harder on himself than anyone I know. When I see others belittling him or not taking notice of his progress it really hurts. His behavior in public has improved dramatically, but it's because we work with him on a daily basis. He is in a special school where we sacrifice a very large tuition to make sure he gets the best help. We sacrifice going on family trips or getting expensive clothes, for example, in order to pay the expenses that come with autism. I am here to tell you that it's not just the tuition for the school, but it's also doctor bills that aren't covered by insurance, psychologist testing, speech therapy when he was younger, occupational therapy that we could not afford for very long, AND the medication!
What does it mean to be "on board" with someone who is struggling with a child who has autism? 1) Don't judge. 2) Learn as much about it as you can. 3)Be understanding and empathetic. 4)Remember that autism doesn't define who the child is, but rather explains the behavior. 5)Don't always assume that the child is at fault... sometimes they can't stand up for themselves. 6)Know that the parents and the child are harder on themselves than meets the eye. 7) Don't forget to praise once in a while when appropriate....it gets REALLY old just hearing negative comments.
I can't stress enough the fact that things aren't always what they seem. Case and point: I can remember one day when my #2 was horrible! I think I was near my breaking point. He had done almost everything you could think of. I had spanked him, grounded him. Nothing seemed to work. (This was before we had a diagnosis.) Well... the week gradually got better and we actually ended up having a decent week. So, I decided as positive reinforcement we would go to Stevie B's Pizza and have a family night. Our rule was the kids had to eat before they could go and play in the arcade. As soon as my #2 finished, he was eager to go into the arcade. We went in and there was a grandma with her perfect granddaughter playing. Of course, my #2 was so excited to play, but I had to get change. I went to the machine and the grandma was standing in line to get tokens. My #2 proceeded to stand by the machine as we waited our turn. However, he doesn't know personal space and he evidently got a little too close and it bothered the grandma. I could tell and so I told him to move and to stand by me. I then looked at the grandma and said, "He's just excited...he's only a kid." (I was hoping she would be understanding.) Her response was, "No.... YOU just need to be a parent!!" My jaw just hit the floor. I couldn't believe what she had said. There are many things I could have told her. However, I just ignored her and avoided her the rest of the time we were there. That is one of the best examples I can share with you to show you a glimpse of what people just don't know and how prejudging someone can really hurt. Little did she know that parenting is ALL I do 24/7 and that I have to pick my battles, and if I reprimanded my child for something he has no control over then I would not be doing my job as his mother.
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I am the tank engine that provides
the momentum to pull the heavy loads,
but if the cars don't follow then I
might as well pull with all my might
til kingdom come 'cause they aren't
going to budge.
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