Autism, Disclosure & Advocacy: Part III (getting a thicker skin)

   I haven't written a post about my Caleb and autism in a very long time. Oh, it's not that things are all hunky-dory around here, but the truth is, autism is our life, and sometimes finding something to write about can feel like finding a needle in a haystack! It's like trying to write a post about my brown hair....I live with it everyday, it's normal to me, what's there to talk about? I would rather focus on quality, not quantity when it comes to what I write about autism. 

   But I was struck by something this past weekend about our lives and our journey through Autism-Land: I'm getting a thicker skin.

   Where once I was all momma-bear on anyone who even looked at us slightly irritated because of the noise from Caleb, or his wild arm flapping and crotch grabbing, I now go, "meh". My role as his advocate is changing all the time, and my need to disclose his diagnosis is getting smaller as he gets older, and I'm also taking it less personally when people seem bothered by him.

   Caleb is beautifully and wonderfully made, and if his "isms" bother people, well, they can go suck a lemon (excuse my French).   :)​     

Caleb playing with a sheep puppet

   I was at Tim Horton's (a coffee shop) with Caleb, and was meeting a woman who had knit me some mittens. She is a sweet and patient woman who was kind and polite to Caleb, despite him being pretty loud and interrupting us a lot (I don't think that's an o.k. thing, btw, and we're working on that with him), but at one point I happened to look to the table next to us, and they were just dead-faced staring at what they apparently thought was the one child circus show! Caleb was sitting on my lap due to a lack of seats, and he is a pretty big kid, and he was being loud and shouting about his new favourite thing, public bathrooms (yuk!), but he was really being sweet. He was clearly happy and enjoying himself, and in a good mood, and I was too!  So, I blocked our coffee shop table neighbours out, and enjoyed my time out with Caleb!

   When we were getting up to leave Caleb walked between 2 tables to stand at the large window that looked at the business next store to the coffee shop, Reid's Dairy, another place Caleb loves! So, he's standing at this window, looking out and says (very loudly, and while bouncing up and down a little and grabbing his crotch), "Look, here is Reid's Dairy!!! Reid's Dairy will have a public bathroom and it has a toilet that will flush very funny!!!" and the people at the tables he had to walk through looked as though they felt their entire day was ruined by this terrible child! Those people had really perfected their rude stare! 

   To me it's apparent that Caleb has something different about him. Maybe people don't know about autism at all, and I realize Caleb looks pretty "normal", but I'm really over feeling crushed about people giving Caleb the stink-eye. This world is full of amazingly different people! Are we to stop and stare rudely at each person we deem "strange"? We'd likely all be standing for all of time staring at someone....  

Caleb is Peter Parker (aka, Spiderman) :)

​   Does this mean I don't care anymore? That couldn't be farther from the truth! If someone said something hurtful out loud to Caleb I would speak up and defend him, but the hurtful gawkers I leave alone. Caleb is always so happy and focused on whatever it is he's being so loud about that I don't think he even notices the looks he gets.

   The trick is to have a thick skin, but a soft heart when raising a child with autism. If I let myself feel hurt every time someone seemed to not approve of Caleb I would be a mess! I could waste my time by constantly being upset by other people, people who, in the grander scheme of Caleb's life, don't matter.

    The people who matter and who know him treat him with kindness (well....except his sisters sometimes....), and he is very loved.

   I still need to be an advocate for autism and for Caleb, but I am seeing where it matters more clearly as I get a thicker skin and as he gets older and more independent. I am trying to remember that people can be rude and hurtful, and stare at someone they think is annoying, strange, or different. But Caleb will always seem annoying or strange or different to someone, and that's ok! I won't always be with him to stand up to every person who never got told "it's rude to stare", and that's ok. He will be ok! 

   I like to think of my thicker skin (and softer heart) as a chance to model proper behaviour towards people with special needs. I don't lash out (which is really just ignorance met with ignorance), or say something rude to the rude person (because that makes no sense either!), I just carry on, and that's what I want people around us to do too. In a situation when people are staring though, I find that for every 5 people with the rude stare, there is 1 person who is smiling warmly at me, in a knowing way. In a way that says, "I get it", and that helps me have an even softer heart.  Be one of those people!!! 

   Having a thick skin is vital in raising a child with special needs, but remembering to keep your heart soft is essential too. You need to remember that love for your child and even for those people who don't understand your child, is what will change the way people see special needs. I do still feel hurt and get angry on occasion because of how other people (openly) view my son, and that's ok, I am human! But my aim is to show the world that autism (....although often very, very loud!) is very different, and that different is very beautiful.


You can find Autism, Disclosure & Advocacy: Part I here, and Part  II here