"Listen to my mouth!"

Janey overall was having a fantastic day yesterday. She was cheerful and upbeat and fun, loving listening to Christmas music with me and having a car ride with Daddy after a day too snowy for a ride the day before. We were enjoying her company so much. Then, as happens, something changed. She started crying, screaming, freaking out over everything. We had no idea what was going on. I snuggled with her on her bed and tried talking about it, asking the same old questions I'm sure she's sick of---"What's wrong? Why are you sad? Does something hurt? How can I help?" She didn't answer. William came in the room and I asked again what was wrong, and somehow the combination of him being there and my asking seemed to bother her a lot, and she hit me hard. I stayed calm, told her that I didn't like being hit, told her I wasn't going to stay snuggling with someone who was hitting me, got up and walked away. She screamed and screamed and screamed.

 After a little while, when I'd gotten her to say she was sorry (with much prompting, and who knows why I ever bother, because I don't think she means it, but I need to have her say it), I went back to snuggling her. She then looked at me intently, stared in my eyes with a look that was unusual for her, and said, twice in a row "Listen to my mouth!" I don't know what it meant. I really don't. I don't think it meant to listen to what she was saying. Maybe it did. But she usually doesn't use language like that, in a slightly indirect way. And she wasn't saying anything about why she was upset. But it meant something. She took the effort to say it, and you could see it was an effort. I stayed up a long time in the night, trying to figure it out. It finally came to me that it might be related to what doctors say "I'm going to listen to your lungs now. I'm going to listen to your heart" I don't think she could pull up the words "lung" or "heart", and she might have been saying something in her mouth hurt and she wanted e to see that, or that she just felt sick and wanted help from a doctor. But she doesn't seem sick, doesn't have a fever, doesn't have low oxygen. In this COVID times, taking her to the doctor when she doens't seem sick is not really a good balance of safety and health. 

 The whole thing brought out so many issues. Why does she get upset out of the blue? Why is it so hard for her to tell us what is wrong? Why does she hit once in a while? What do mysterious phrases she says to us mean?

 The hitting seems like her way to say she's really, really seriously not liking something. She doesn't do it often at all now, and when she does, it doesn't have the feel of something spontaneous. It feels like a planned thing, at least planned a few seconds in advance. The last time she really hit me was when we were trying hard to do Zoom classes, and I told her it was time for one. I think last night she was telling me she really didn't like my endless questions. Of course, hitting is not at all the way I want her to communicate, and I need her to know that, but I also need to listen to what issues are upsetting enough for her that she feels she has to hit. 

 The "listen to my mouth"---phrases like that are about as frequent as hitting, not very frequent at all. You can tell she thinks about them before saying them. The way she looked at me was very striking. I could tell she really wanted me to pay attention. And it makes me feel awful that I wasn't able to quite get her message.

 It's frustrating so often, figuring out Janey's needs. I don't want her to be unhappy, but of course, like all of us, sometimes she's going to be unhappy. But it's so hard not knowing why she's unhappy. Was she just sick of being around me? Did she think about something upsetting? Did something hurt? Was it just too long a day, and she was tired? It's hard dealing with this, but of course I'm sure it's a million times harder for Janey, being so upset but so unable to explain why, doing her best to let me know in the way she can but not having me get it. Janey, I will try to listen to your mouth, and your heart, and your mind, and all of us. I am trying hard.

Talking back to "I don't know how you do it"

Over the years, the phrase "I don't know how you do it!" has come up over and over in autism writing as probably the phrase autism parents most dislike hearing.  I admit at times it's bothered me a bit too, but lately, I've come to peace with it. It's struck me it's all in how you take hearing it, in what you hear when you hear it.   What do I mean by that?  Well...

Take it as a compliment   When people say the phrase, reword it in your mind as "Wow---you handled that meltdown/screaming/tantrum/obsession/biting/what have you  well!"  Assume the speaker is truly awed by your ability to deftly navigate the waters of autism.

Take it as a question  Think of it worded as "HOW do you do it?  Imagine that the speaker is truly wondering how you cope.  Use it as an opportunity for education.  Fill them in on some strategies you use, what techniques work to calm your child, what respite type services have been helpful, what educational strategies have worked best.  Turn them into an advocate by informing them what actually helps and works.

Take it as a confession  I think a lot of parents feel, secretly, that if they had had a child with severe special needs, they simply wouldn't have been able to deal with it---that they would have done whatever people do when they simply can't take it.  I often let people know that I felt that way too, before actually being faced with special needs parenting.  We learn as we go.  Despite lovely fables about parents being chosen from above to have a very special child, the truth is none of us are prepared for our special kids.  It's a tough on the job training, but I tell people they too would have done just fine if they had been "chosen".

Take it as an offer of help  This one can be fun.  Say something like "You know, I don't know how I do it either.  Thanks for noticing.  Yes, I'd LOVE your help.  When can you babysit?"  Seriously, the phrase can be an opening to admit sometimes we CAN'T do it alone, and we can use any help we can get.

Take it as shock  When people are faced with a situation they haven't seen before, one that seems overwhelming to them, they don't always know how to respond.  I've most often heard the phrase after Janey has severely melted down, has pulled out all her tricks like ear-piercing screaming and arm biting.  People just don't know what to say.  I think the phrase often is almost involuntary---a reaction to seeing behavior they have never seen before.

Take it as better than the alternative  What if people said instead "I could do that much better than you.  I can certainly see how you do it, because it looks very easy.  I don't know what the big deal with autism is.  It's a piece of cake"  I don't think most of us would like that much.  In a way, hearing the phrase is a badge of honor.  We are doing something tough, and we are being recognized for it.

Take it as a statement of love, for you and your child  The truth is, most times I've heard "I don't know how you do it", it was coming from someone who cares about me.  They might mean any of the meanings here, but they are saying it because they care.  Sometimes it's not the words that really matter, but the thought behind them, and sometimes, as with our kids, we have to read more than plain words to know what is being said.  Sometimes, we can answer without words too---just send back a shrug, a smile, a hug, a laugh.

None of us know how we do it.  We are like cartoon characters that walk off a cliff.  As long as we don't look down, we just keep going.  We might be defying the laws of physics, but we are doing it, one way or another.

The Many Meanings of "Snuggle on Mama's Bed"

When your vocabulary is pretty limited, as Janey's is, words and phrases have to work overtime.  They have many, many meanings.  This is something it's taken me quite a while to get a handle on, especially with Janey's very most used phrase, "snuggle on Mama's bed!"  You'd think that was a pretty straightforward thing to say, that it meant, well, "I want to snuggle with you on your bed, Mama".  However, it rarely means just that.  Let's run through about 5 of the most popular actual meanings!

1.  "I want you to stop doing what you are doing"  This one is most often used when I'm on the computer, which Janey hates.  She'll come over, issue the famous phrase, and that means I'm supposed to get up immediately.  If I do, and I go to my bed to snuggle, she usually ignores me there and goes back to whatever she was doing.  But if I then try to sneak back on the computer, she notices right away and comes over and repeats the phrase, with a lot more vigor and anger.

2.  "I want you to leave me alone"  This meaning is one I've just recently figured out.  It comes up when we are ALREADY snuggling on Mama's bed, or elsewhere.  It means she wants me to go find my own place to snuggle, and leave her alone on the bed.  It often comes up in the middle of the night, when she has decided she doesn't want to sleep in her own bed, but doesn't want us cluttering up OUR bed either.  She wants room.  She wants to be by herself.  Figuring out this one was a breakthrough, as it always confused me very much that she constantly asked to snuggle when she was in the middle of snuggling!

3.  "I am upset and I need comforting"  This one is pretty easy to figure.  If a video isn't what she wanted it to be, or if we are ignoring her urgent requests for bacon or ice cream or the like, she wants to reset the scene and to get some help calming down.

4.  "I want to replay something very specific we did at a past time"  Since we spend so much of our time snuggling on Mama's bed, and since I often try to sneak in a little learning during that time, I often read to Janey on the bed, or pull out a bag of toys (I keep a few near the bed) to spark conversation, or recite nursery rhymes, or sing to her, or whatever I can think of.  There's a big variety.  If one of those activities was something Janey really liked, she will ask to snuggle in order to get me to do that activity again.  The problem is that she expects me to know what one she is thinking of, and doesn't like it at all when I don't.  Sometimes she's give me a few cues, usually by picking up a toy or handing me the book, but other times, she just starts screaming because I have no clue what I am supposed to do.

5.  "I don't know what to say, so I'll just throw out a phrase I DO know how to say"  I think this is a very common use of the snuggle phrase.  It's one of the few phrases Janey says with ease, and when she wants to communicate something but has no idea how, or when she just wants to connect, she'll toss out a snuggle request.  It's familiar, it's easy, and it usually gets SOME kind of response.

I wish there was a way to get Janey to talk with more variety---I wish it with all my heart.  It must be so extremely frustrating to have to rely on so few phrases to say so much.  I don't know how to help her with this effectively.  I often say back to her what I think she REALLY means, trying to give her the words---"Oh, you want to be ALONE on the bed right now!" or "You are upset and need some attention!" but this doesn't seem to lead to her using those phrases herself, although she will look happy I'm getting it.  I know I am very fortunate that Janey talks at all.  Many kids at her level of functioning don't, and I never take her talking for granted.  I love to hear whatever she has to say, but I wish for her that she could better say what she means, or even that we dense adults could better understand her meaning.