Battling the 'normal' mindset

I've always been bothered by the expression, "Things are back to normal", mostly because of the last word in the sentence (I won't use the word but for the sake of this post I'll make an exception).  Also I'm not sure but it seems it could be a substitute for "I like my routine and while at times it may vary, please don't do or say anything that calls my perception of normalcy into question".  I suppose my stance comes from cultural relativity more than anything.  It is important to respect other practices and beliefs because with all the different languages and religions around the world you should keep in mind that what you do or say may look weird to someone raised under another set of ideals.

How does this relate to autism?  Well, some of the stuff my son does would cause many to start the "that's weird" or "that's not normal" rants.  I believe that those phrases are helping to reinforce discriminatory views across the board.  It is ridiculous to think that what you say or do is 'normal' and when someone either acts or speaks differently than they are 'abnormal' or 'weird'.

This causes families dealing with developmental delays such as autism quite a lot of stress and worrying.  Not only are we trying to teach our children skills so they can catch up to their peers but we are also forced to deal with people who think our kids shouldn't even be in the same class as their son or daughter.  As if just by being in the room, a child with autism is going to cause other students to begin to struggle academically and socially.   This is something that causes me a lot of anguish.  No one really knows what goes on behind the scenes.  I don't know how much work you or anyone else puts in to help their child.  I cannot know because I'm not there.    As far as my son is concerned, nobody was around to see all the work he has put in to learn limited language skills and how to use the bathroom.  What about how long and hard he, his parents and his therapists worked just to get him to sit at a table and focus on the task at hand?  As far as we're concerned we aren't trying to normalize anyone.  In fact we are lucky to have a special person in our lives and we are helping guide our son on his journey as he acquires skills needed to make his life as fulfilling as possible.  I would also like to add that Diego is funny, sweet, and overall an awesome boy!  So you can keep your 'normal' tag, we don't want or need it.

Picture this

I've written about it before and here are two examples...what is going through his mind?  He has always loved bubbles and this bubble exhibit at a children's museum we visited was a dream come true for him!

The Tecpanecatl Family and 30 Stories in 30 Days

Today is the big day! My letter giving background information on our son and his sensory issues has posted at http://www.hartleysboys.com/ !!


Please visit the site and look for story #7 about the Tecpanecatl Family, “A Gentle Boy with a Giant Fear” and leave a comment or question and I will be more than happy to respond. Our experience has opened our eyes and more importantly our hearts to the struggles of all families dealing with developmental delays and Sensory Processing Disorder. I am doing my part to spread knowledge so that we can remove negative stereotypes associated with the disorders and allow everyone to receive access to the therapies and services needed to help them on their journey. Thank you Hartley (@ParentingSPD) for allowing me to share our story.

If I could only catch a glimpse

I often think how helpful it would be if I could view the world from my son's perspective.  If I had a few hours or a day even, I would finally understand how certain sounds feel to his ears, how he interprets language and find out what type of thinker he is.  Why do I bother to think about something that isn't even possible?  During a recent conversation I had with my sister I mentioned to her how much the average person takes things for granted.  Take a typical day, from the time you wake up until the time you go to sleep and stop and think how you would function if you perceived the world differently.  Imagine if all of the sights and sounds and sensations were scrambled.  Even if there was only a slight jumbling involved, the results would alter everything about you and how you handled yourself.  I told my sister that once he is able to tell us, we will finally know how our son views his surroundings.  Please let the words start flowing.

Before he was able to use any words, our days were filled with a lot of guessing and we weren't right all the time.  He was frustrated and it was (is) hard to see him upset.  Most of my responses when I'm asked why he reacts a certain way start with "I think..." , "I'm not sure but most likely..." or "Probably because..."  Do you see a pattern there?  A lot of guessing is involved.

After I try to put myself in his shoes for a moment I stop and think if I really do want to see the world as he does for any amount of time.  Would I be afraid of what I saw or felt?  Could I ever look at the world the same again as I would constantly feel sorrow and pain for what my son experiences on a daily basis?  Would I ever be able to stop worrying about him?  Who am I kidding?  To some extent, all of that is already true.