I am not big on making New Years resolutions. I don't ever like to delude myself, so I don't like to make ones I know I won't keep. That's just a setup for feeling awful about yourself, I think. But I've had some thoughts about what I want to do in 2013 in regards to Janey, and in regards to autism in general. Four ideas, to be exact....
1. Delight in Janey whenever possible. There is so much hard about raising Janey, so much that is tiring and overwhelming. But there is also a lot that is wonderful. I am lucky that way. I am going to try very hard to delight in her, when the opportunity presents itself. I'm going to enjoy her singing, her amazing smile, her delight in little things, her eccentricities, the rare moments her talking comes through, the multiple moments that she uses the speech she has to get her point across. I'm going to enjoy dressing her up, and giving her foods she loves, no matter how odd, and showing her off. I'm going to sit more with her watching her favorite shows and laughing along with her to them. I'm going to find more music she likes and listen to it with her. I'm going to read her or tell her the kind of reading she enjoys---poems and fairy tales and rhyming books. I'm going to let myself just plain have fun with her.
2. Be easier on myself when the autism parenting gets tough. Somewhere along the line I got the message in life that you must always carry on, keep going no matter what, don't allow yourself to wallow or admit being overwhelmed. I don't think that's serving me any more. If Janey doesn't sleep all night, and I have to sleep most of the next day, I'm not going to spend the day cursing myself and trying to stay awake and get things done. I'm going to admit to myself that Janey is one tough kid. She's a kid that overwhelms people like her doctor in just a 10 minute visit. She's a kid that very few people, without the training in fire Tony and I have had, could handle at all full time, without breaks, without help. She's a delight often, yes, but she's very, very autistic. She's a toddler in a 8 year old body. She require constant supervision. If I need to rest and spend a day doing nothing more productive than playing Scrabble and reading, I am going to tell myself that the rest of the time, I work a job that respite workers get paid good money to work, and I deserve a day off once in a while.
3 Speak up about autism issues more. I don't know how often I bite my tongue when confronted with someone advocating the latest "cure", when someone suggests I should find a babysitter so I can "get out more", when someone says that if I really tried, Janey could sit nicely at a table, use the toilet consistently, when people tell me how special diets, intensive ABA programs, Floortime all day long, getting a dog, going to Mongolia to ride horses, swimming with dolphins, etc, might be just what Janey needs. I admit not everyone has told me those things personally, but they are all out there in the world of "autism cures". Often, I just smile or say thank you. I don't step in. I don't comment on Facebook conversations that I see that are pretty much attacking other autism parents for not trying this or that. I keep the peace. I feel a little guilty about this. I dare say I know more about autism than someone who once read an interesting Reader's Digest article about it, and I should not be afraid to speak up. If it's hard for me to do, I can think about my friends with autistic kids, especially those just starting out on the good ol' Holland trip, and speak up for them.
4. Treasure my fellow autism parent friends. I thought a lot about the past year last night. I thought how few people get my life, about how I have noticed that after spending time with our family when Janey is with us, often the invitations to spend time together don't happen again, how I always have my guard up when people are around Janey, how I always watch what I say, how she acts, how I'm always prepared to flee if she gets difficult. How it's extremely isolating being her mother. And then I thought about the people I know get it. I thought especially about the first friend I made through this blog---that's you, Michelle!---and although we haven't met in person yet, how the few times I've talked to her by phone and the emails we've shared and the Facebook statuses we can read from someone who really, really does it have kept me going on many a tough day. I hope to become real friends with anyone out there who reads this and can relate to it. We have to be there for each other. I realize more every day how important that is.
With that, I'll start 2013 with optimism and a smile, and with love to everyone sharing this journey.