boy autism spectrum sams world
The dictionary defines the words extreme as "existing in a very high degree...going to great or exaggerated lengths...exceeding the ordinary, usual, or expected."

That pretty much sums up life with autism. 

Everything with Sam happens in the extreme ~ the good and the bad. I think it's why autism is so exhausting. Autistic life happens at a very high degree and certainly exceeds the ordinary. Everything is just more

Take for instance, Sam's view of going to school. This is his first year in school (we previously homeschooled him) and he loves it. Like he is sort of bummed that we're off next week for spring break kind of loves it. He literally runs across the parking lot to the door every morning. He is never difficult to wake up in the mornings either.

The other morning I tried to encourage him to be less Sam like in his arrival. He response was to tell me, "Mom, it's a big day!" I had a sudden moment of panic that I had forgotten something and asked him why. "Because it's a school day!" he said with a grin and off he bounded.

This extremeness is evident in all aspects of his life. Video games and television have a huge impact on him because he feels everything, he plays everything with such an intense complete focus that totally absorbs him. And when he has to be done it's almost as if he is an addict and suffers from withdrawals. It can be brutal on everyone involved.

What it looks like is hard to explain. He'll be agitated and antsy. He'll have a difficult time controlling his mouth. And let me just be real honest here, there is nothing worse or harder to deal with then the persistence of an autistic child who will not and cannot control their words. The sheer ability for repetition could be used as an instrument of warfare. I say will not and cannot because there is a certain amount of this that is willful, a choosing to persist. But there is a large part where he literally and physically cannot stop himself from speaking, from saying the same phrases over and over again. He is utterly out of control and way way over the top. This is made even more of an issue with puberty. Girls get all kinds of emotional and boys just want to fight something.

It has to be terrifying for him. That feeling of complete and total loss of control, of feeling and acting like he is going to fly into a million little pieces. We like to think that total abandonment of self control would be freeing but the opposite is actually true. Spinning wildly out of control is like that horrifying feeling you have as you're falling out of a tree and there is no way to stop yourself from hitting the ground.
boy autism spectrum sams world

So we work to ground him...to make him feel safe...to physically connect him with the world. Currently we're in a grounding mode. Monday through Thursday there are no electronics. This means no tv and no computer. On Friday, Saturday and Sunday he is allowed half an hour of computer (internet) and maybe, but not back to back, half an hour of the Microsoft paint program. He is allowed to watch one movie on Friday and one movie on Saturday.

It may sound like we're talking about grounding as in restriction, (That's it young man! No tv for two weeks!) but that's not really what we mean. It's more like we're grounding him in the sense that we're acting to connect him with the foundation of reality and helping him attach to the real world and find his place in it.

We all need that. We need people and practices in our life that ground us...that connect who we are with the real world outside of the ones that we can escape into through entertainment or the one we can create in our own minds that are shaped only by our own perspectives and inner dialogue. Not a safe place for anyone, autistic or not.

There are other things we do to help ground him in a physical sense. Big heavy work helps him almost as if the added weight forces him to feel the ground underneath his feet and helps him find a physical location for himself. This is one of the reasons that weighted vests and blankets are so helpful with young children in therapy. It seems to connect them to time and space in a tangible way.

I mentioned that Sam is easy to wake up in the mornings. In this week's Sam story I'll share a little about that routine. Every morning his alarm goes off at 5:30. For a while he was getting up and coming to ask me to come get him at 5:45 which is his actual wake up time. (Mine is at 5) Before bed one night he wanted to remind to wake him up at 5:45 and said  he was tired of having to get up and remind me at 5:30 every morning. We had a lengthy discussion about the fact that I certainly didn't need him to be up at 5:30 to remind me to wake him up at 5:45. His alarm apparently is set for both times because I hear it the second time as I am coming into his bedroom. Practically every morning I also I hear, "You're late."

Rotten boy.

boy autism spectrum sams world



6 Comments

  1. Well, I hope Sam and the rest of you have a wonderful Easter, Marty! XO!

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    1. Thank you, Dina! May your family rejoice and celebrate the resurrection of the King as well!

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  2. I have been following Sam's story for ages, and have taken a keen interest, as I work with high-school students on the autism spectrum, some autistic and some with Aspergers. My son is nearly 40, and exhibits many of the traits you mention in Sam. Today I especially identified with: The dictionary defines the words extreme as "existing in a very high degree...going to great or exaggerated lengths...exceeding the ordinary, usual, or expected."

    That pretty much sums up life with autism.

    Everything with Sam happens in the extreme ~ the good and the bad. I think it's why autism is so exhausting. Autistic life happens at a very high degree and certainly exceeds the ordinary. Everything is just more.

    Jonathan is doing a doctorate now. He has extreme ability and more to digest encyclopedia's of knowledge and to recite information to me for hours on end. I am trying to train him to let me ask a question sometimes just to get a short break from listening, but he doesn't
    t cope well with that at all and gets intensely frustrated with not being able to finish what he was saying, and then to summarise, It's the summarising I can't deal with as I have become an intense listener and I hate having to hear it all again in the summary!

    I thought you may find it interesting to read of someone like Sam who is much further down the track?
    I have certainly really appreciate learning about Sam :) He is such a character !

    Mary, New Zealand.

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    1. Mary! Thank you for sharing and I do enjoy hearing from others who are further down the road than we are! It's amazing the new information, ideas, and treatments that are around now compared to when you were working with your son when he was Sam's age.
      I think there is much we can learn from people such as yourself that had to forge a path on your own with few resources. Please feel free to share more!

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  3. Marty-I do find that parents of students at the High School where I work as an ESL teacher, often ask if they can ring me and quiz me about how I have dealt with some behaviours, and I am only too happy to answer questions if I can,
    Diagnosis has only been made since Jono was in his 30's, and we now know His father is a total Aspie, also near genious level.
    I tell Jono he has incredible giftedness, but I don't tell him how many container ships full of GRACE I have requested to get me through !
    It is only possible to cope with the panic attacks and paranioa with God's help !

    If you have any questions, email me at gemmill.mary@gmail.com.

    I will keep an eye on Sam through your writings- I have kep the whole story since I first found it to read sometimes to gain insights for students at my school, as you write in a delightful way that makes me know God helps you as much as he helps me lol/

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    1. Thank you, Mary, for sharing such kind words as well as your offer to chat. I will remember that for times when I need it. Bless you as you work with others this way!

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I appreciate any thoughts you'd like to share...it makes our visits so much more enjoyable!

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