It's our anniversary. Let's have a Pity Party.

November marks the anniversary of when the word autism came to live at our house. The day when Sam was labeled forever. The little boy I was carrying in my uterus who was born 3 weeks later would also grown into that label. In spades.

Autism helps you to realize how important the little steps are. Yesterday in the car I was thrilled when Sam was able to talk about the best and worst of the day. The best was his grilled cheese sandwich at lunch (it beat out the $14 steak he had for supper. Go figure.) And the worst was me getting lost. I knew it would be, but to talk about his feelings from hours ago. It was a tremendous stride.

But, I'm afraid that as hard as I try to avoid wallowing, sometimes the best I can do is label it. "Yeah, I'm wallowing in self-pity today."

I was going to take the boys to Krispy Kreme and shopping. That would free Paul up to take a nice long bike ride. But then Nathan began throwing himself on the ground. Winging his iPad across the room. Throwing a full cup of coffee after it. Screaming and crying. Not exactly the kind of behavior you want going on in a store, much less in a moving vehicle. So all our plans changed. And I couldn't even leave him for hours, because all he wanted to do when he wasn't throwing himself on the floor was to sit on my lap. And Paul stayed home, because I'm not the best at coping with all three when Nathan is like this.

I hate talking to parents of NT kids. Complaining about sitting in the cold for hours at football practice. That's too bad. I was sitting for an hour in climate controlled comfort at our OT's office. I can see how I got the better end of the deal. Their kids won't do their chores? Teaching Nathan to put away the dishes and mop the floor is part of his homeschooling program. It takes an adult twice as long to show him hand over hand or orally prompt him how to do it and keep him on task. I'm so lucky my husband can stay home to watch the kids. Your husband won't do that? Yeah, mine has to be home even if we sent Nathan to public school because someone has to be here at 2:15 to get him off the van. No one we know will watch Nathan and risk getting him off the van. Paul hasn't earned Social Security credits since Sam was born. The government couldn't give two shits that we take the burden of care. They don't care now and they won't care in 10 years when our kids age out of the system and become our full time burden unless we somehow manage to find a jobs program. So the best he can hope for is survivor benefits if I die first.

So today I'm feeling bitter and short-changed. I'll feel better soon. But today we're celebrating our anniversary!

Comments

  1. You're entitled to have days like that! I hope you're feeling a bit brighter today. This time next year you'll have a 2nd anniversary and I'm hoping that you'll look back at this post and see the teeny tiny steps forward that you and your boys have made, due to all your hard work;-)

    xx Jazzy

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  2. actually this was our 10th anniversary of Sam's diagnosis. I can see all kinds of steps forward. But just as one side of the coin is that every step our kids make is a gift, the anniversaries/birthdays remind us how far away from the road more traveled we are. I am taking all the country roads through all kinds of places. Some are super neat and I love seeing them. And some are super scary and I wish I could hit the lock button and drive faster to get away from there.

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