So we went to Panda Express on Sunday, because my sons are seriously addicted to their chow mein and orange chicken. Okay, I’ve been known to knock back a plate of it, myself, but my affection has lessened over the years. They’re still mad for the stuff, so every once in a while I have to drop $40 on takeout Chinese food. And, of course, we got fortune cookies, which are totally not forbidden occult devices as long as you know they’re a gimmick and a game and thoroughly make fun of it while you read them, which we basically do.
My fortune was some balderdash about finding peace. Which, yes, has been a big focus of my life over the past few months. But things have been happening lately that have been disturbing my peace in a very serious way. I’m talking about Miss Autism’s rather sudden behavioral decline and the difficulties we’re having in coping with it.
We’ve gotten along fairly well with the whole “living with autism” thing for almost twenty years. We have never lived with a strict schedule, because we’re just not that type of family, and we’ve refused to fall in with most of the fashions in autism treatment. So that meant we didn’t go with vitamin megadoses or heavy metal chelation or that digestive supplement everyone was so convinced would be a miracle cure back in ’99. We didn’t turn our house into an Applied Behavior Analysis haven with 24 hour a day behavior modeling and we basically forced Miss Autism to deal with life in a fairly normal household. She has always had her own little retreats, of course, and we’ve made a lot of concessions to her behaviors, but she still has to live like a normal person.
We did this to avoid the whole “one minute to Wapner” kind of meltdowns that happen when strictly scheduled things become vital to an autistic person’s life. We couldn’t completely avoid them, of course– school is Miss Autism’s big deal, and if the bus is late or it’s a holiday (or, heaven forfend, the summer break), she usually just goes to pieces. But she’s expected to go along with unscheduled trips and dinner that may or may not get served at 6pm and no PECS visual cues on everything to tell you what to expect next. And she’s mostly done well. She’s not completely inflexible and ruled by the clock, even if her behavior leaves a lot of other things to be desired.
But lately, her behavior has become a danger to herself and we’re constantly working to keep her safe. And her destructive tendencies are getting much much worse. Things disappear constantly as she throws them away, throws them over the fence, or just somehow gets rid of them when no one is looking. Some things, she eats– and that doesn’t just mean food items. Toys and headphones and small items of all sorts have found their way down her gullet, and I’ve spent more hours than I care to remember waiting in a hospital room with her, waiting for a scan or an x-ray to see what, and where, the items were.
I’m wearing down. And I know my blog is “endurance mom” but everyone has a breaking point. Mine’s close. I am trying to find a balance between her needs and those of the family. It’s not easy, and it may not be possible for her to live at home forever. In the short term, it will probably mean medications and tradeoffs we’ll have to make with our own time and attention. In the long term, it will probably mean some sort of assisted living situation.
This catches us at a bad time, however– we’re not in the area we plan to live in permanently. We’re even considering moving out of state in the next couple of years to be closer to family and in a less hostile climate. We definitely can’t go through the stress and strain of finding the right living situation for her only to move out of state and start all over again. But we can’t go on like this forever. It’s a rough situation and we’re all struggling with it. There isn’t an easy solution.
My fortune cookie says that peace is a valuable thing to seek. And I know that it is . . . but inner peace only comes when you’ve learned to accept things as they are. It’s a bitter pill to swallow that I may not be capable of keeping my daughter at home with me forever. It’s going to take me some time to process that one, so inner peace . . . yeah, that’s going to take some time. Sigh.