When Casey was little, December was never a good month for her. For years, she started acting out and having meltdowns near the first part of the month that lasted until Christmas. I could never understand – we stayed with our same routine. We didn’t go overboard with activities that she couldn’t handle (while all the time making sure Mandy got to do what she wanted during the holidays.) I love Christmas, but I dreaded the month for years.
She finally started relaxing, a little, in her mid teens, but she still has an exact list of what she wants to happen and she will remind me of that list often. When she was in her early 20’s, I finally learned why December was so hard for her all those years ago and it about broke my heart.
Santa. She was never sure she had been “good” enough for Santa to bring her presents. She knew her behaviors weren’t acceptable – she knew I was upset. She knew she shouldn’t scream and beat her head. And she knew Santa wouldn’t like it. So she worried that Santa wouldn’t bring her any presents because she was “bad.” (Let me say right now – I NEVER called her bad for her meltdowns!! I was stressed and I cried about it, but I never told her she was bad). I could still cry thinking about all those years that my sweet little girl worried about Santa not being happy with her – and not being able to tell anyone what was wrong, so she screamed. She ran from teachers. She beat her head on walls. The month seemed endless at times.
I only found out what had happened because of Casey’s incredible memory. We were reading a Christmas book one year and she said, “bad.” I told her she wasn’t bad. She looked deep in my eyes and said, “Screaming bad!” I told her that screaming hurt my ears and she needed to tell me what was wrong instead of scream. Still looking so serious, she said “Screaming bad, no Santa!” and I finally knew – ten years later why she had such a hard time in December.
Everyone, everywhere is telling kids to be good or Santa won’t come. Imagine how you would feel if you thought you were a bad kid – that your sister and brother were good, because they didn’t scream – and you couldn’t tell anyone that you were scared Santa wouldn’t like you? How sad. I still get choked up thinking about that. What could I have done differently? What could I have said that would have alleviated her fears? And why didn’t I know it then? (nothing like a nice load of mom guilt for the holidays, right? UGH!)
I’ve let go of the guilt now. I still wish I had known, but I can’t change it. Casey loves the entire holiday season now, so she wasn’t scarred for life over her misconceptions of Santa. But, still…. sometimes, autism sucks.
Casey is well into her list of needs for Christmas. She has reminded me about 100 times since noon yesterday that she wants to go see Christmas lights tomorrow. (WHY did I tell her I was thinking about going???) We had a long discussion about where we were going to go (It’s posted on our Facebook page) and what we would see. She is excited – another thing to be checked off her list of “must-do’s” for the season.
She watched me wrap a few presents earlier today. I asked if she was going to make her presents this year or buy them. “Make.” ok – what do you want to make? “Ornaments.” Ok – do you want to paint them or use foam pieces? “Paint.” Ok – I’ll get you some and you can make them. “Buy!” Yes, I will buy some. “NO! BUY!” You want to buy your presents? “Yes. Shopping.” OK – we’ll go shopping. “Paint?” Casey – are you going to buy or make your presents? “YES!” and she giggled and danced out of the room. I have no clue what she wants to do.
Meanwhile, Rob heard the conversation and said “Cory? Mandy?” Yes, Rob you can buy them presents. He laughed and went back to his iPad. He keeps life simple. He won’t remind me constantly that we haven’t shopped, yet. He’ll go whenever I’m ready. He’ll wrap when we have time. He may or may not tell people what he got them. 🙂 He’ll go see lights and the only thing he’ll remind me about is that he would like a snack from somewhere.
Casey is laying on the couch now, giggling about the Christmas dance next week. She looked at me and reminded me that she needed to wear her light up necklace and head band. And a Christmas shirt and Christmas socks. I told her I wouldn’t forget (like she would let me!) and she went back to her iPad. Another thing on her list that we have to do every year.
The holidays may be hard for your child, too. You may see more behaviors. You may hear more screams or less sleeping or their diet may change. While you are looking for possible reasons why, look outside the box – sometimes, way outside the box. Whatever is bothering your child may have nothing to do with Christmas at all. If I’ve learned nothing else from 30 years of living with autism it’s to expect the unexpected and to know that nothing is too far outside the box to be true.
I’ve tried some weird ideas to help the kids. Some worked, some didn’t. The point is – be open to trying the strangest things. If your child can’t tell you the problem, how can you possibly know the answer? Just like with Casey and Santa – I never guessed that was her problem. Don’t limit yourself – you never know what might work for your child!
Casey is back. She just reminded me that I told her we could do a Christmas craft today (and yeah – I completely forgot! 🙁 ) She also reminded me that we are going to see Christmas lights tomorrow and see more on Christmas Eve and that we are making cookies with Mandy on the 22nd. Oh – and the dance is the 19th. Time to distract her with pretty papers before she really gets going on her list of plans for the holidays!
Have a great week, everyone! Take time to breathe and enjoy the peace of the season!