Thursday, April 30, 2015

Perception Contemplation

Perception is reality. 

I don't know. It's just too black and white for me.  Maybe if we add one word I can get on board with it.

Perception is sometimes reality.  

There.  The first quote seems to imply that perception is ALWAYS reality.  I think the best way for me to explain my thinking on this is to share a few Matthew stories.

Perception:  He's in his own world and not listening to what others are saying, especially adults.
Reality:  A few weeks ago (maybe over a month now - I can't believe I could keep this story under wraps that long) we were sitting in church and our pastor was delivering the sermon.  Our pastor mentioned the word Mt. Calvary.  Matthew looked up at me and put his arms out and moved his body to signify "flying".  I know what you're thinking...there were no airplanes at Mt. Calvary, but follow me a little bit longer.  It took me a minute to make the connection, but when I put it together I was floored.  We recently figured out that when he made that flying gesture it meant that he wanted to hear The Army Song (a song that we sing in Children's Choir).  That took some detective work to figure out, believe me. But when we sing the song we put out our arms like we are flying for the line that says "I may never fly over the enemy".  I quickly went through the words in the song in my head until I hit, "I may never march in the infantry, ride in the calvary..."  So even though the word calvary was used two different ways...he heard it...he was listening!  The potential for what this could mean for him is HUGE!  (And yes, I still think I should get a prize for keeping that story to myself for so long!)

Perception: He's not aware of what's going on around him.
Reality:  One day at school he was heading up to the carpet and he passed a classmate who was having trouble finding her book.  He paused, pulled her book out far enough for her to see and kept on walking up to the carpet to join his peers.

Perception:  He probably has trouble with long term memory.
Reality:  If he has been to your house, he will remember exactly where you keep your vacuum.  When we are driving and are one the same road as his doctor or dentist offices he will do his invented sign for those places.  When we go to my sister's cabin (which we only visit 1-2 x a year) he will remember specific places that objects are kept.  And he will know if they are missing!  We found that out the hard way last summer when he kept signing "wagon" because he remembered that they had had a riding toy that you can push.

Perception:  He can't problem solve.
Reality:  At school they started using a "standing desk" (a desk that is tall enough to stand at).  They took pictures on his ipad and commented that he loves it.  That week at dinner, he pushed away his chair and pulled up his stool and made a "standing table". Now I don't condone this next behavior but it does show his problem solving abilities.  He made garbage by unrolling toilet paper and throwing it away because he loves to empty wastebaskets (one time he threw away multiple pairs of underwear to make garbage.) When we are at restaurants or new places he will sign "bathroom".  He often barely has to go, but he knows I will not say "no" to the bathroom sign and it gives him a chance to explore and see more.

Your perceptions will be based on what you initially see: Matthew's noises, his jumping, his flapping, his smelling, his silly giggling, etc. Your perceptions will also be based on your experiences with other people with autism or other disabilities.  If you're in the education or medical field your perceptions might even be influenced by a clinical definition of autism and its characteristics.  And some of your perceptions might be true...SOME of the time.

At least that's my perception.  And you know what they say about perception...



  1. Great post. Nice to see you get it and if you truly do get it, you may want to consider getting his permission to post about him, just like you look for his sister's permission. Or at least be very careful about what you post. Revelations are a moving target. I get it. I've had many of my own. Just saying you might want to rethink your blog header. If he's not already reading, some day he will, and some day he will find these posts. I'd be pissed as HELL if someone posted anything they wanted about me, but asked my sisters for permission to post about them. Why don't I get the same courtesy?

    1. Anonymous, Thank you for your thoughtful comments. I guess when I wrote that blog header I was taking into consideration her age and her personality. I could ask him, but to be honest he is not at the stage where he could conceptually understand what a blog/internet is. I do understand that some people might say that then without his permission I shouldn't write about him at all. However, as you suggested I am very careful about what I post. My hope is that my stories are somewhat educational as well as entertaining, while showing autism in a positive light. Knowing Matthew and his personality, I believe he would want that. I do appreciate your thoughts and will reflect on my blog header.

    2. Wendy, I'm a different Anonymous but I agree with the above poster. As an autistic adult, I can tell you that I'd be very, very uncomfortable and upset if I found that my mother had written such private details of my life and posted it online.(I just read your whole blog, after coming across that insightful comment).
      Perhaps you would consider using a pseudonym at least?
      Seems like you and your partner love your son a lot, and are working hard to respect Matthew in every way. I like your approach. It also seems you're doing quite well, but there's just this one little thing.
      Only it's actually a really big thing, Huge. Chances are, he''ll be searching the internet sooner than later; I hope you will think about this. I think it's super, super important and I think you would want to insure it never becomes an issue by respecting his privacy now.
      As I said before, if you feel you must write publicly about your experiences with your son, I feel strongly that it would be more respectful to Future Matthew if you would at least refrain from identifying him. Pseudonyms all around!
      Thanks for reading my reply. And I'm sorry if this is rude, but I'm feeling very passionate about the subject, and protective of this kid whom I do not know (but I do know some very intimate things about him).

      Thanks and take care.

    3. Anonymous,

      Thank your for your insight. I'm sorry it has taken me so long to reply, but I wanted to be reflective and think about what you said. I think that you have made some good points and I will continue to reflect on your suggestions as I move forward.

  2. thankyou for this blog...I truly think it shows how smart Matthew is and he would be proud his mom showed others maybe their perceptions of him may not always be right...

    1. Thank you Anonymous! He really is amazingly smart and I love the interesting ways that he is able to show that.

  3. When I was doing childcare for Matthew and Abby recently, Abby asked me if I would make waffles. I said that I did not have a recipe for waffles her and I did not know if you had a recipe. At that point, Matthew came out of the kitchen carrying the box of waffle mix! I did not even know he was listening to our conversation. Well we had waffles for breakfast and you can guess who had the most.

    1. Well...he DOES love waffles! His ears probably perked up on that word!

  4. Jim sent the link to your blog and I liked it so much I had to update my password to my old Google account (I'd long forgotten it since it hasn't been used in many years) so I could "follow" you. I took the opportunity to read your older posts as well as the latest one.
    When I worked in special ed, we had the opportunity to watch a film about a young woman with autism. Her behavior and inability to communicate verbally had everyone convinced she had significant cognitive impairment as well. One educator didn't believe that and developed a communication devise she could use. It turned out she was very bright and had quite a lot to say! That film changed
    me, challenged my perceptions. I think your blog can do the same. You had the courage to open up your life and share your heart (Matthew) to show the person behind a label is so much more than that. There will always be the "snarky playground mom" types, but change happens one heart at a time.
    I think your blog is great just as it is. Don't change a thing.

  5. Shawn, Thanks for your kind words. I remember a similar experience of watching a video (a different one), but it has stuck with me. I think videos and words can do that. Which is definitely one of the goals of the blog!