Monday, October 8, 2012

Life Pre-Autism

I found this picture while I was cleaning today. It was taken about 8 1/2 years ago while my grandmother was visiting. She wanted a family picture. I tried to tell her I didn't think we could really get my kids to sit and take one, but she insisted. At that time, autism wasn't a term I knew anything about. This is life pre-autism. Not necessarily pre-autism symptoms. Just the label of autism. All the trials were there, though I had no name for them at that time. In the background of the original pre-cropped picture you can see around the corner into my boy's room. You could see that there were toys and things laying everywhere. This was because Bubby used to disassemble his entire room everyday, several times a day. He emptied every shelf and every drawer. I would clean it up and the next day he did it again. This was my reality. I knew he was a handful. No one would watch him. Every sitter would call my husband and I before we were even finished eating while out on dates. They could not deal with his energy and his fits. He was likened to the Tasmanian Devil on Looney Toons. I would agree with that assessment at that time. I learned that I could not trust others with my high spirited little guy, because they thought he just needed some discipline. Relatives were not nice to him, as they thought him to be spoiled. Beans is laughing and Bubby is screaming. Bubby screamed all.the.time. We have very few photos of him before the age of 5 where he wasn't screaming. Beans was pretty happy most of the time, regardless of what was going on around him. His mood was not determined by environment. As a matter of fact, as he grew I noticed that he didn't respond to much in his environment, at all. In this moment, this was my life about 1 year pre-autism. It was a quiet kind of chaos. You can see it in my face the way I am trying to hold it together through my exhaustion. It's a bit of a sad memory for me, as I wish I could reach out to the younger me in the photo. To let myself know that my kids are different, but okay. That I was different, but okay. That I was not the failure I feared myself to be. My confidence was shaken by what I didn't know and didn't understand. I wish that I could have gotten some of the support I needed back then. That's why I try so hard to do as much for the autism community as I can. I want to help other young parents out there that are as lonely, and scared as I once was. All parents deserve a place to go where they can get the answers and support they need.


  1. Oh, Inner Aspie, I love your words here. You still look fabulous! (Even though you say that you are trying to hold it together and are exhausted.)You are a great support and voice in the autism community and I am thankful for what you share with with us. It has helped me for sure! :-)

    I have had like a film over my eyes when looking back at photos during pre-autism time. I think I have not gotten to that point of processing all of it.

    It was a very rough time, my husband was in denial until about a year ago. Even though he said the right words he still believed that Daniel would grow out of it and I have been left to work on everything on my own with Daniel. All the symptoms were there, but I had no idea what was going on.

    Daniel would scream and have horrible fits all day long. One minute he was quiet and playing the next he was upset, throwing toys. He would have the living room covered in toys, but then have the laundry baskets strategically placed in the hallway nice and neat. If I moved them he would get so upset with me! He was up all night long until around five years old, I think... I cannot remember anymore it has turned into a blur.

    The words that triggered for me looking at your picture are exhausted, confused, desperate, scared, and lonely. That is what I felt during the time I did not know anything about autism.

    Now the words I have are, still exhausted on many days, but elated, hopeful, excited, and bright future. It makes such a difference to have answers, understanding, and support.

    1. Yes, our lives appear to be so similar! My husband wasn't always in denial, but he wasn't always as there as I needed him to be.

      Bubby, also used to go into screaming fits for hours. It was awful. I never knew what would set him off. It got to the point I remember almost holding my breath in anxiety as soon as I would get a hint at his mood turning. I can't think of much worse than that. It was so awful. I guess, not knowing why was worse. He also didn't sleep much until he was 2. He'd take his naps, but he only slept like 6 hrs a night. When he was a baby he didn't sleep at night. The naps were good enough for him.

      I don't feel all those things anymore, either. Now, everything is much more positive, thankfully!

  2. I so loved your discription of Bubby in this piece - you could have been discribing our son Jim - right down to the fact we called him Taz!
    Hang in there - it does get better - honest!

    1. It's gotten much better. No one would hardly believe he used to behave that way looking at him now. He is super picky about anything being out of place. You'd never guess he used to destroy everything in his path!


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