Sunday, June 12, 2011


Stand up. Sit down. Stan up. Sit down. Stand up.

All I want to do is get out the door, but I can't seem to get our older son out of his room. He's trying. But, things just aren't quite right.

Sit down. Stand up. Yes, this last one was good. He takes a few steps forward and sees that the hose on his trusty Dirt Devil upright is tilted just a little too far forward. This just will not do. He moves it back. Forward. Back. forward. Back. Ok. All is good.

"C'mon, buddy," I urge.

He takes a step forward, but it seems that he's stepped off on the wrong foot. So, he walks back to his place to step off once again.

Sigh. This is absolutely painful to watch.

Not every day is this bad. Our son hasn't been feeling very well lately. His chronic gastric issues are flared right now, and when he doesn't feel well, he tries to control his environment, how he lives, how he feels, who touches him and how he responds to touch---basically, he tries to control everything he can because he can't control the pain.

Hey, I'm no better. In years past, when he'd enter such a state, I met his attempts to gain control of his life with my own obsessive behaviors.

If he didn't sleep, well, I logged all of his food. Why isn't he sleeping? What food can I eliminate? Is there a sleep medicine I can give him in times of need? If so, what dose? How much is too much? Has he gone to the bathroom? If so, describe. Shall we put him on a sensory diet at home? If he responds, then we musn't deviate even a little bit. For, if anything works once, it surely isn't luck. This all takes careful planning, and I was the person in control.

The truth of the matter is, neither of us is in control. We are both desperately out of control in this life. I think it is safe to say it is scary for us both.

Our son is a prisoner in his own body. He has mature thoughts that he can't verbalize. He has a disability that nobody can fix. Very few people will actually know him as a person. These are all things that are out of his control.

I watch our son in pain daily. No matter how much we have tried to ameliorate his autism, nothing has worked. The chaos with two children with needs, the energy level, the crisis level--these are things that are out of my control.

Honestly, when our son stands in the middle of his room winking each eye five times before he can take a step forward, I would like to pluck my hair out one by one. However, deeeeeeep breath. Self control. He can't help it. Take the opportunity to breeaaatthhheee.

I think maybe I'm learning that the only sort of control I can depend upon in life is self control--and even that is shaky. lol. I think I'll stop mourning the loss of control in my environment and start working on myself a bit. We might all be a bit happier. :)


  1. You have a lot on your plate to control. Nice work.
    A Pirate Looks Past Sixty

  2. I like how you mentioned that when your child is in pain, he tries to control the environment because there isn't much he can do about the pain. My daughter is the same way.

    Great post on control. Just breathe...there will be better days ahead :)

    Cheers, Jenn.

  3. Hang in there. Sounds like you have it rough.


  4. I enjoy your blog. I can visualize so much of what you say.

  5. As a mother who also has a child with Autism, I know how the day to day living wears you out. I love my kid, but there are times when I just need time to myself. Be sure to get some time for yourself too: it makes a world of difference!

  6. I'm a teacher and have had children in my classroom with autism. I find it interesting as to how they express themselves whether this is when they are in pain or otherwise....

    Fantastic blog!

  7. It's important to work on yourself before working on what's around you. I'm learning that the hard way.

  8. A very sensitive and touching post, thank you for sharing it!

  9. "...I'll stop mourning the loss of control in my environment..."

    If there's one thing that motherhood brings (besides loving so deeply that it becomes a part of who you are, rather than something you do) it's the realization that control of anything outside of ourselves is an impossibility, so we have to find a way to stop trying or we'll lose our minds.

    You have a lot to deal with every single day and it seems to me that you handle it with an amazing amount of wisdom and grace. I'm sure that your sense of humor helps a great deal.

  10. Control really does take on a different meaning with an autistic child. You certainly have your hands full. I think you are doing a brilliant job, and I am sure that writing about your experiences really help.

  11. I think the fact that you can stand long enough to wait for your son to go through his rituals and get himself into the right space to take the next step speaks volumes for the control you already have. Bravo and hugs for everyone in your space in the world.

  12. Just from reading your post I think you exhibit an amazing amount of control, patience, and love. Well done! Amazing blog, amazing effort, and kudos to you!

  13. Your patience astounds me. It is not one of those virtues I ever learned well. I admire you.

    My GBE 2 Control blog:

  14. I don't think I was known for patience before becoming a parent. He's my child. He needs me. That's where I get it most of the time, and, even then, I faulter.

  15. Each time I read your blog I hold more respect for you than I did before starting. You are an amazing woman. It is true that God doesn't bring us more than we can handle, but he never expects us to handle it without him. The all-consuming love of a mother is without compare, except to the love of God. While we never quite make it, as Mom's we all work toward that perfection. All of that being said, I lost control many times trying to raise my kids and I can't imagine anyone who wouldn't, but the love always overwhelms the frustration.
    Your environment is difficult and basically uncontrollable, YOU appear to me to be in control of the most important thing, however. You appear to be in control of a loving and nurturing home. Excellent blog and giant (((hugs))) to a Mom doing all she can. It's enough, btw. :)

  16. i hear you 2...LOVE LOVE and big breath LOVE AGAIN. Once i heard this boy speak; from London, he was autistic in a LARGE family and his mom had no money, so just let him sit amongst his siblings; cared for him loved on him, yet the kids played with him, he learned to interact "become more social" it wasn't until he was an adult he could communicate just what he was absorbing. SO LOVE ON darlin....yourself too!!

  17. I can't imagine your life. Seriously. Kudos for all you do.

  18. Great job on this one hon, can't imagine having to learn the self control you have to have in order to make it through each day, excellent job on this. :)

  19. Thanks for the perspective...although neither of my children have special needs, I can totally relate to the desire to pluck your hair out one by one! Keep the faith, keep breathing, and keep loving...

  20. This was an amazing blog. I can tell how much you love your son JUST by the fact that you recognize how to respond to his needs.


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