Monday, 22 October 2012

#Autism is not Contagious- Come Closer Please!

It's the oddest thing.  I will be out with the boys somewhere and Nate will start stimming.  Some people smile at him, but others back away, clearly uncomfortable with this atypical behavior.  For the longest time his stimming didn't seem that out of place- he was still a baby- lots of babies do the whole total body stiffening thing- it's a sign that their neurological system is not fully mature.  But he is too old to brush it off as that anymore.  He is different- and it is obvious- from the monotonous sounds to the jerky movements, to the lack of speech. My little boy is different.  And even to the casual observer it is obvious.

This is also the case with Jack, although not to the same extent.  With Jack it's more like people are overwhelmed- he goes up to everyone (and I do mean everyone) and does his Wall-E impression or tells them about his 15 to 20 pet hermit crabs in great detail.  Note:  he does not have any pet hermit crabs, not one.  The usual chain of events goes like this:  Jack approaches person (almost always an adult), Jack starts talking, the adult acts interested for a minute, the adult realizes he is not going to stop talking.  An annoyed look replaces the previously open expression on their face, sometimes they even walk away.  I was given some cards by the receptionist at the boys' OT awhile back- I think they are from TACA.  They are called, "my child has autism" cards.  Here's the link:

I have never handed one out.  I have a hard time drawing even further attention to the boys.  I have been letting Jack go a bit more lately- he is starting to "get" it a bit more- social behavior I mean.  But when he is in a stressful or new situation he has a tendency to revert back to his old behaviors.  Which he did yesterday, when we took him to a fall festival at a farm.  Look who he had painted on his face.  Who did he show it to?  Describe it to?  Every single person he encountered, and some that he sought out.  Many people are very kind about it, some find him adorable.  Then the others....
I want to be clear.  Jack did a GREAT job at the farm yesterday.  He went on a tractor ride, he jumped on a trampoline, he played inside some playground tractors.  As always, reactions are just a bit more intense with him- if he likes something, it's LOVE, if he doesn't want to do something it is a meltdown.  There is very little gray area with him. 

I have definitely developed a thicker skin with respect to the boys and perceived reactions to them.  Even so, I am a very sensitive person.  I feel people's looks, I can sense those stares, the reactions.  It makes me feel incredibly protective of both boys.  Nathan sat for as long as we would let him yesterday playing with straw (waving it in front of his face).  I saw a few looks.  Yes some people noticed his odd behavior.   Probably way fewer people than what I think.  It's not like everyone is sitting there staring at my kid.  That's just how it feels :)
Confession time.  I used to be one of "those people".  I avoided kids that had disabilities- I never wanted to seem like I was staring, I felt awkward.  I am here to tell you that as a parent of special needs children, I would love for you to talk to my boys, to treat them like the wonderful little people that they are.  It's difficult I know- you don't want to say the wrong thing, you don't know what kind of interaction they are capable of.  So what?  Give it a try.  I don't want to have to hand out those cards.  I don't want to have to explain myself, or my children to anyone.  I want them to be accepted. And let's face it- according to the new research, it's 1 in 88 children that are affected by autism.  Until more effective treatments are found, or preventitive measures are taken (which would mean actually acknowledging the problems- not likely), this is not going away.  So try doing what I am learning to do- embrace it.  Don't push it away, don't turn away, don't make faces or act offended or annoyed.  Don't pretend you don't see either, I know better.  Ask me questions, ask my child questions.  I can't guarantee that they will answer, in fact, it's much more likely that they won't.  But I believe they hear everything, that they absorb and observe way more than they get credit for.  And the more that they see people trying to communicate with them, the more likely they are to try to reciprocate, right?  So come closer, talk to them, you might be surprised. 

1 comment:

  1. My OT peers have done a great job for the most part. They really worked hard to get me to engage with them. Hopefully what I experienced will be the norm, not an "aberration".