Friday, April 17, 2009

Sweet Little Lies.

Autism has turned me into a liar. I lie every day, multiple times a day. And it goes something like this:

Well meaning person: "Hey, how are you doing?"
Me: "Good, good. How are you?"

I can count on one hand the number of people that I would respond to differently, and actually admit I was having a hard day. If you're one of those five people, thank you for being one of the few people I can be honest with, that can hold my pain. If you aren't, don't take it personally, trust me, you don't really want me to tell you the truth.

People ask how others are doing all the time. It's really just a form of greeting, an extended hello. Rarely do people even hear your response (which they assume will be fine/good/great) before they launch into talking about their own sh!t. I lie to myself most of the time too, tell myself that I'm okay and doing just fine. In reality, I'm probably just barely coping. My mantra is to take things a day at a time, and worry about tomorrow, tomorrow. I tried to explain it to a friend of mine by saying "my day-to-day life is a roller coaster, my lows are lower than you can probably understand, my highs are centered around minuscule milestones that the average person wouldn't think twice about".

The only people that can truly understand what I am going through are other parents of Autistic kids, or parents of children with disabilities that render them incapable of communicating, functioning appropriately, and acting "normal". And that's okay, I don't expect other people to get it, how could you? Three years ago, if you had said I would be hugging a shrieking child tightly to my chest, stroking his hair and telling him "it's alright", trying to keep him from hurting himself, all because he is upset that his baby sister is crying, I would have thought you were nuts. But those are my days.

Today's high was Max tearing off little pieces of toast to chew instead of jamming the entire slice into his mouth. The low (so far) was getting a call from his daycare and hearing him screaming bloody murder in the background, having them tell me that he had been doing this for over and hour and that they didn't know what to do. I took the picture posted above right after I got off the phone. See, I'm fine. Really.


  1. Vanessa3:20 p.m.

    You're a tough lady, Kat. You WILL be just fine. I know a lot of people who wouldn't in that situation (like say, ME!) But you're going to be ok. You actually got your MPP to meet with you about this; that's pretty hard-core.

  2. Awh, thanks Vanessa. You reminded me I need to call Kevin Flynn back...gotta light a fire under him.

  3. Anonymous6:42 p.m.

    Much love sent your way.


  4. It's hard to imagine....but it does get better. But, it doesn't go away. I think now about 6 years into autism and with a kid who is virtually recovered, I'm down to crying myself to sleep only twice a year.....asking "why him...why do things have to be harder for him? why do I have to work so hard?" In the early days I asked that every, we've come a long way baby and you will too! Keep your wits about ya mama, you're opening a can of whoop ass on this autism stuff and don't you forget it.

  5. Oh, kiddo. Keep breathing. And hey, just so you know, your posting about autism has given me more knowledge and also a broader base for compassion, so I got to have a great conversation with a mom who came in looking for books for her daughter--I hope she went away feeling a little better, and it's thanks to you. (And to Max.) Brave lady.

  6. savvymomx27:42 a.m.

    i can totally relate to this post. i find a hard time carrying on conversations with many people for the same exact reason. i recently read something that a mother said about her experience as a mother to a child with autism. she said that there was a way in which she would always feel set apart from other people with typical children and that she didn't want people to think her life is a tragedy- but she didn't want them to think autism was no big deal either. this is my struggle in conversations with friends and acquaintances. i find it hard to be completely honest because i don't want people's sympathy and when i lie and pretend everything’s ok, i feel like a fraud. not to mention the difficulty of enduring conversations with friends who complain about their children’s insignificant and petty problems. i can’t help but think deep down, “must be nice to have your problems”.

  7. Kat you speak for a lot of people. When I say "I am fine" in my head is usually another conversation altogether!

    Also I really wanted another child when Khaled turned 3, but I am so afraid of having another one. I am religious so you know doubting God's plan for you is almost sinful, but how can you not be afraid!! You are pulling it off everyday though and give me hope.

    And to savvymom above - urrrrgh the other day a girl was asking her mom for a donut at tim hortons and mom was yelling " no you cannot have one" storming off outside the shop with the little girl following sulking - I was like man I wish Khaled asked me for something - anything! (except alcohol of course - he is only 3 afterall)

  8. @ Bariah, glad I am not alone and maybe it isn't so bad to keep how I really am to myself.

    I think if you want another child, you should go for it, but I can see why you would be hesitant.

    When people tell me that one day Max will be talking my ear off and I will wish he would shutup, I tell them they are completely wrong and that if he is ever able to talk my ear off, I will thank god for every single syllable that comes out of his mouth. I would give him a car tomorrow if he was able to ask for it.