"Snuggle on Mama's bed" is the phrase Janey uses far more than any other. She probably says it 20 or 30 times a day. It's often the first thing she says to me after we've been apart, the last thing she says to me at night, and the first thing she says to me in the morning. So that's why it's a little strange that it's only the past week or so I really figured out what it meant.
For years, I thought the phrase meant what you would think it would mean---that Janey wanted me to snuggle with her on my bed. I would do so when she asked, if at all possible. Sometimes it seemed to calm her down, sometimes not. But oddly, she'd often ask it when we were already snuggling. Or she'd ask it, snuggle with me for a second or two, and then jump up and go on her way. When she did this, I'd get up too, and go about my business, only to have her come back a minute or so later and ask the same thing again. We'd sometimes go through this for 10 rounds or more, and Janey would get very annoyed if I resisted the constant demand for what I saw as second-long snuggles.
What led me to figure it out was noticing that more and more, Janey wants physical things to be a certain way. Tony, Freddy and I actually all noticed this separately, but didn't talk to each other about it until one day late in the summer. Janey does a round of the house, putting things as they should be. The door from the living room to the bedroom must always be closed. The Wii remote that we use for Netflix must be on its back, not on its side or upside down. The blankets on the edge of the couch must be in a certain position. Any room that is being used in any way must have a light on. I could go on and on. Obviously, there's a touch of OCD there (something I am far too familiar with), but it took us a while to see as Janey doesn't seem to get upset by things out of place---she just fixes them. Or does she?
I wonder now if many, many of Janey's long crying spells have something to do with something that is not in the right place, that is out of place and can't be fixed by her. And that is what I finally figured out about "snuggle on Mama's bed". It doesn't mean she wants to snuggle with me. It means she wants me on my bed. She wants me in what she sees as the "right" place. And she gets upset if I'm not there. It's a little flattering, actually, that I am more important that doors or remotes. She needs to know where to find me, if she needs me. She doesn't like me to be unpredictable. I'm not sure what it says about me that being on my bed is the right place for me, but OCD type thoughts don't always make any sense.
I tested this theory a couple ways. First was just talking to Janey about it, saying "You like Mama to stay on her bed when you feel a little nervous, don't you? That's why you ask me to snuggle on Mama's bed, to get me to be there?" The look on her face said a huge amount---a mixture of surprise and extreme relief. I then said "You are upset now, so I'll get on my bed for a while so I'll be there if you need me" Janey came over to me, tapped me, went to the living room, came back in a few seconds to make sure I was there, tapped me again---over and over and over. She stopped crying, she looked hugely relieved---we were both very happy.
However, just understanding Janey in this way doesn't really create a solution. Obviously I can't spend every single minute on my bed (although sure, there are days I'd go for that) And if I am alone with Janey and she is in a very upset mood, I have to be close to her to make sure she's okay---I can't be on my bed while she runs around. But in limited cases, like when Tony is also home and she is having a fit, I am going to, at the first request to snuggle, just get on the bed and stay there for a while. When I get up, I'll tell her. I'll try to make that little part of her world predictable, for now. I'm working without a map here. I doubt there's anything in the parenting literature that tells you what to do with a minimally verbal, intellectually disabled autistic nine year old who is showing scenes of OCD. Am I doing the wrong thing to do what she wants? For right now, I'll risk it, partly just to show her I do understand. And we'll go from there, playing it by ear, as life with Janey so often demands.