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Monday, November 7, 2011

The Patience of Job

So you want to get in on the latest hot trend in parenting, being the parent of an autistic child? Congratulations! You're in for a world of excitement! However, there are a few traits you might want to make sure you possess before you give it a whirl. Today's trait---PATIENCE!

Let's use a little illustration, shall we? Perhaps from my own life? Okay Dokey! Today, Janey woke at 1 am! She had some fun requests---mainly "Barney!" The one Barney she likes to watch over and over and over and over---Barney's Top 20 Countdown, which is just 20 of his "best" songs. It doesn't even have the fun parts in the middle of trying to figure out why parents would leave their kids at some kind of day care where the only supervision seems to be a stuffed dinosaur that sometimes comes to life. It's just the pure songs, which are now carved in my mind for life. As much as it's a good time, I felt I wasn't quite ready for it at that time of morning, and so said "No, Janey, it's still nighttime. See? It's dark out. We will watch Barney in the morning". Well, Janey felt otherwise. So she kept asking for 2 hours, while I was half asleep. I would have actually given in at many points, but I was so darn tired I kept falling back asleep, only to be woken up by her kicking me or jumping on me and saying "Barney!". At 3 I decided Tony had slept enough, and woke him up to take over. He put Barney on, which of course only worked for a few minutes. But instead of falling back asleep, as she sometimes does, she stayed awake to think of other demands---"I want a baba! I want cheese cutter! I want cabbage! I want Kipper! I want take a bath! I want TV off (which means on)! I want snuggle on Mama's bed! (which always sounds hopeful but really just means she wants to wake me back up to see if I will be more responsive to her requests)" And all of this is paired with her manic style laughter, which is back. It comes back every couple months, along with the sleeplessness.

Tony was a saint, being very calm at all times. When I finally gave up on sleeping, about 5, I tried to be too. I've been gritting my teeth and being patient all morning. We had a bath, we put on Barney, I made a baba. Just now Janey came over and wanted ice cream. I said no. She is currently screaming her lungs out, kicking my chair, and if she knew more curse words, I'm sure she would be cursing me.

It's 8am. We leave for school in 30 minutes. I am hanging on for that. She likes school a lot better than home lately. I should say this upsets me, but it really doesn't. It makes me happy. I'm glad she has a school like that. One of the big differences at school, though, is there is more than one adult to deal with her. Here, there is just me right now, and soon, when Tony has to go away on business, there will be just me for weeks. I will be drawing on every ounce of patience I have. Sometimes, I bet I half would appear lobotomized to people watching me deal with her. I have to push down the emotions, answer cheerily but firmly, keep going and doing my everyday life stuff as well as trying my darn best to figure out what she needs and how to keep her happy, or at least not sad, or not crazily manic.

So, prospective autism parents, work on patience! Just to be on the safe side, if you are thinking of becoming a parent at all, work on patience! It's needed for all kids, but if you hit the autism jackpot and get an autistic model child, you will need it in spades.

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