Friday 15 April 2011

Outcast Parent

I remember a time when I was just a mom without any worries about autism. That time was before Dayton was diagnosed, when life felt normal, like everyone else's life. I figured Dayton would make friends, be a typical  teenager, go to college or university, get a job, get married, have kids of his own (I wanted 5 grand babies) and live life to the fullest, be a contributing member of society, and most importantly, be happy and successful.

I remember what my life felt like before the diagnosis.  Why didn't I appreciate it more? Instead I worried about stupid things like finding the the best quality baby food, debating whether I should just make my own.  My worries are so much greater now. Will Dayton make genuine friends, friends that care about him?  Will he get married? Will he be able to hold down a job? Will he have the five grand babies I've dreamed about?  Will he be independent? Will he have the means to take care of his family?  Will he be able to function without my support?  On "bad days," there seems to be one thought running through my head...  I know what needs to happen.  I just can't die.  It's just not an option. Who else would take care of my babe?

I want that carefree feeling I had before the diagnosis. I'm thinking we both do, so I take my babe to the park!!!  The park is literally in my back yard.  I make a deal with myself that I will bring my camping chair and a book that has nothing to do with autism and read while he plays, you know, like the rest of them parent folk do.  I will not sit there and assess Dayton's behavior and wonder how and when to "jump in" and intervene. I will foster his independence by trusting he will take care and remember the rules.  I will talk with the other moms and join in their conversations. I will not let autism dominate my thoughts and I will relax and enjoy the company of moms my own age.  "Hoooooo Raaaa!!!"

Before we head out the door, we must go over the rules:

“No touching anyone, keep your hands to yourself”
“No screaming”
“Find mom if you need help” etc.
I ask Dayton to repeat the rules back to me and check for understanding.

I grab my Kindle and chair and Dayton races ahead of me to the play structure. I take a big breath and think of how relaxing this outing will be. As I approach the play structure, a friendly woman says "hello."
“Hi” I introduce myself and point to Dayton "that one over there is Dayton."
“Dayton, yes of course. It’s nice to meet you.”
Dayton, yes of course... What does she mean by that? Does she know him? Does she know about his diagnosis?
“Stop it!” I tell myself as I unfold my chair. “Stop it right now!”
Two other women are seated on the super uncomfortable bench.  They both turn and smile at me.
“We were just talking about St. Malo” a mom tells me. “Have you been there?”
“Oh yes, I love camping there, so much fun for the kids."
“That's right” she beams. “The kids go off on their own for hours while the adults hang out at the camp site. It's such a relaxing day."  I'm thinking wow!  Their kids might go off for hours and come back, but I'd probably never see mine again. I stamp the thought out of my mind and turn back to the conversation.

“And if you add a little more seasoning and put it back in the oven for another 30 minutes, it will be the best pot roast you've ever tasted” one of the women says.
Pot roast! They have time to make pot roast on a week day?  Am I the worst mother ever?
I listen in amazement as the women around the table share their recipe secrets. By the time I've finished prodding my son to do simple tasks all day long, I can barely remember my name I'm so tired. Cooking a pot roast would not be on my list of things to do.

With nothing to add about pot roasts, I turn towards the play structure to see how my babe is making out. Sitting at the end of the slide happily arranging his pokemon cards, he appears completely oblivious that every other child is playing tag. I resist the urge to go over and prompt him to participate.
“Focus” I tell myself. “It's time to relax.”

The conversation has turned to homework. Now here's something I can talk about! “Can you believe how much homework they get?” one of the mothers says.
“I know!” I chime in.
“I'm thrilled about it” says the short one. “It keeps him off his video games and gives me time to make dinner.”
“That's true” adds the third one. “I use the time to do laundry. Every now and then Stuart has a question but for the most part, he does his work on his own.”

I'm frozen in shock! What? Did they just say they use this time for themselves? Did I hear that correctly? My mind drifts to our homework sessions. Armed with motivators and lots of patience, I coerce my babe to complete his homework every day. After an hour of prompting, presenting questions in different ways, silly diagrams and theatrics to keep Dayton interested, homework is finally done. He races off to his video games while I stare vacantly into space, too exhausted and emotionally drained to move for the next five minutes.
I snap out of my trance and smile. The women are chattering about their children asking for cell phones and wanting Facebook accounts. But I can't relate to any of it and I'm bored. It's as if I’ve been dropped here from a distant land, with a culture so foreign that we might as well be speaking a different language.  Think it's time to go.  I announce to Dayton he has 10 minutes left to play.  Then 8, then 5, then 3, then 1 minute left.  I'm sure the women behind me think I'm nuts.

While I'm saying my goodbyes, Dayton begins to stim and flaps his hands while doing a little jig. I think it was the first mom that spoke to me that stared at Dayton incredulously, and not being able to resist, she glances at one of her friends as in “Are you seeing this weird behavior?” Part of me tries not to think of their conversation when I leave and the other part of me doesn't care.

Walking home, I ask my babe if he had a good time.
“Great” he says. Looking at his delighted face my heart feels like it might just burst. In his pure innocence and naivete, it never occurs to him that people might judge or gossip about him. Why would it? He accepts and commends others just as they are. The world might think he should change his ways but my son doesn't care. He's not out to impress. People spend a lot of money on workshops trying to develop that kind of self confidence.

With a smile on my face I hold his hand. It's true, sometimes I long for my fantasy world where I have time to cook pot roasts and relax in a park while my son plays with his peers. I don't have that luxury but my son has enriched my life in so many ways. With a new perspective I have developed a compassion and respect for people with differences that wasn't present before. There was a time when I looked upon people with challenges in pity. Now I desire to know them and discover their depth within. Now I strive to make a positive difference in other people's lives. My son has made me a better person. It has come with a price and plenty rewards but I am grateful because I wouldn't want it any other way.


As my dad always says, consider yourselves hugged,

Lou

3 comments:

  1. Lou,
    This blog entry made my day! So beautifully orchestrated! Just when I thought this was one of the worst--you came to my rescue with this post. It helps in knowing that people like you understand. While there are so many on this earth who bring turbulence into our atmosphere--there are a select few (such as you & your son) who can turn a sour day into sweet relief. God Bless you my dear friends :)

    ReplyDelete
  2. Scott,

    You're far too kind. You yourself have done a lot in the autism community, and have sacrificed time and patience for the good of others. Thank you for your kind compliments and I thank God I was able to make someone's day.
    Blessings to you and your family :)

    ReplyDelete
  3. You know why you were bored by their conversation?

    Because it was BORE-ING.

    That is one of the greatest gifts of autism - it makes us focus on what is really, REALLY important. So while they gnatter on about pot roasts and homework, you are busy ensuring your son's future health and success.

    Trust me, looking back in 20 years, it will all be worthwhile. And a life well spent.

    ReplyDelete