Why I should buy tickets to the Nascar race instead of autism is a look inside how life is hard as an autism parent. Research has shown that autism parents suffer PTSD on the same level as combat soldiers. This news is not surprising to me at all. Autism will suck the life out of you if you let it. Autism is hard.
This post has been archived from 2009. The sentiments remain the same even as we approach 15 years of autism.
Tired to the very core.
Tired of spending every waking moment thinking autism, researching autism, having to modify homeschool curriculum for autism, making interactions successful because he can’t figure them out because of autism, dealing with people who didn’t want anything to do with him when he looked and acted different but now that it’s not so obvious it’s a different story.
Tired of trying to come up with ways to ease him into the youth group at church while keeping in mind his developmental age not his chronological age. Tired of having to teach every little detail to him. Tired of having to remind those who work with him that this very large young man is still a boy.
This past May marked the 8 yr anniversary of his diagnosis. 8 yrs ago, we had a non verbal, non potty trained, highly prone to tantruming mess of a boy. He was not the child that I had ever dreamed. He could not go into Publix because the lights bothered him. He didn’t sleep for more than an hour or two. He had no sense of danger which made him a threat to himself and to others. All he would eat was Kraft macaroni and cheese. We lost friends and even some family members didn’t want to be around us anymore because our child was different. Churches asked me to not to bring him back to their nursery. It was by far the darkest time of my life.
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I know God says He will never give you more than you can handle. Sometime He does though so you will fully rely on Him. With His Strength,I handled it. For 8 years, I have researched therapies, diets, supplements. I have figured out ways to pay for them when insurance wouldn’t. I have stayed up late making special food. I have gotten up in the middle of the night to give medicine that needed to be given every 2 hrs. I have done what I thought and knew in my gut needed to be done. When I stand before the Lord, I will not be accused of being a bad steward of the blessings of my children. I did it because I’m his mom and he depends on me.
But I’m tired. So very tired. I need a break. I need to go do something non autism related and be a person again. I need to spend one evening just being me. Hanging out with my handsome husband and doing something that we enjoy. Before our marriage is irrevocably broken in the strain of autism.
Hence the Nascar reference. Tickets to Talledega are dirt cheap, as in never been cheaper. They have a free campground and we have a tent. Gas wouldn’t be too terrible to get there. Leslie , my favorite niece, would be happy to watch the children for the weekend for us. All in all, it would cost about $200 to do it. I could recharge and regroup. I could have an autism free weekend. I could work on my marriage . Simply put, I won’t . I should and I know it but I won’t. Why ?
Because $200 would pay our co pay for physical therapy for a month. It would buy a month’s worth of GFCF food for Logan. It would pay for a month’s supply of B12 patches , omega 3s and other medications needed to get the copper out that his little liver can’t do alone. It would pay for half of the heavy metals test that he needs to check his copper levels again and we can’t put off much longer. Heck, it would buy the trampoline that he so desperately needs for sensory input and his at home ot program. Or pay for the saltwater pump so he can continue to play in the pool he loves after this month ( he cannot continue after this month with no saltwater pump because chlorine turns to copper in your body. )
I’m nearing exhaustion. 8 yrs later, I am so thankful for the progress we have made. I am so thankful for the people that God has placed in our lives now. Our phenomenal church that accepts Logan, warts and all and always finds ways to include him in events.
But right now, autism sucks and I’m tired. So very tired.
More links to autism and PTSD: