Good Friday, an IEP meeting and telling Janey a story

Janey had Good Friday off from school.  We never did, growing up in Maine, and it catches me a little by surprise every year.  

Days like that, single days off that aren't federal holidays so Tony has to work, are hard days with Janey.  This year, though, I realized I was dreading the day less than I had in the past.  It's not that Janey has been in a particularly good mood.  There's been a fair amount of screaming and arm biting lately, for causes unknown.  But I don't feel in despair when this happens as often any more.  I think I finally feel confident that if I work at it, I can calm Janey down, at least for a while.  That's a combination of lots of things, I'm sure---her maturing, the school's hard work, Tony and me gradually becoming Janey-trained---lots of stuff.  Whatever it is, I am glad of it.

The day before Good Friday was Janey's IEP meeting.  I've been to a lot of IEP meetings in my life, more than most people, I'd say.  Every time, I leave feeling grateful for all the people on Janey's team.  They seem to get her, to love her, to truly want her to succeed...they are good people.  

For the first time, though, I'm going to have to probably reject a part of the IEP.  At the start of the meeting, as always, I was asked what my particular concerns about Janey are right now.  I said what's been on my mind lately---that I want a full court press to help Janey communicate, to be able to tell us what is on her mind, particularly in the areas of emotions and health.  I want her to be able to express why she gets so upset, and to tell us if she is in pain.  These are not idle wishes, they are possibly life and death things---thinking about Janey's appendix rupture, and thinking about the levels that Janey's furies and tantrums can reach.  The speech therapist, for various reasons, proposed lowering the amount of speech therapy Janey gets.  No matter how I look at it, I can't see this as a good idea.  She said she felt this would give Janey more time in the classroom to learn functional life skills.  But I feel that we can teach her skills at home much more than we can give her speech therapy at home.  So, I said during the meeting that I will be opposed to the lowering of that service, and everyone was very kind and understanding (and although they can't say so, and didn't say so, I think there was some agreement in the room with my feelings)

Keeping Janey happy on Good Friday, I kept with the theme of trying to help her express herself. After one outburst, as I cuddled Janey to calm her down, I told her a little story---an idea prompted at the meeting by everyone telling me how well Janey responds to being read to (which I wish she did at home!)  I said something like "Once there was a girl named Janey.  Sometimes she got VERY angry and screamed a lot, and bit herself.  Her mama and daddy didn't know why she was so angry, because Janey didn't tell them with words.  Her mama and daddy can't see inside Janey's head.  They don't know what she is thinking.  So when she doesn't say words with her mouth, they don't know what's wrong.  The end"

Janey's reaction was---wow.  I didn't expect it.  She looked at me with a look that said "You don't mean it?  You really can't tell what I am thinking?  You don't know?"  Of course right there, I am saying I DID know what she was thinking, and I don't.  I'm not sure that is what she was thinking.  But the look she gave me was quite something.  It was a look of sudden realization.  I wonder if all these years, Janey just assumed I COULD know what she was thinking and feeling.  I don't expect any miracles from her possible realization that I can't.  But it's a message I'm going to keep sending.

I included the part about words being said by mouth as I think perhaps Janey says words in her head a lot, and doesn't realize they aren't audible to me that way.  Often I'll ask her something, and she looks at me like "why are you asking that?"  To her, what she thinks and what she says out loud might seem the same.

There are areas where I am ready to stop trying.  The OT at the meeting said she isn't really any longer trying to get Janey to write.  They are working instead on stamping her name.  I am okay with that.  Janey has never, ever shown the slightest interest in or skill with using writing utensils.  Her IEP doesn't include any work on learning letters.  That is fine too.  I don't think Janey is going to learn to read, at least not in a traditional way, beyond what I think she can already read.  But speech?  I think, or I hope, that Janey will learn to express herself with more ease.  Perhaps I'm wrong.  Janey's speech comes and goes, but in reality, she has never gotten back to her two year old talking level.  But I have to hold onto that hope, and try very hard to figure out how to help Janey tell us what we need to know.

Happy Easter to all of you who celebrate it!

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.

Magical Mama

This morning featured a scenario that plays out over and over again with Janey.  She asked me for oatmeal for breakfast.  We had one little packet of it, and I made that for her.  She ate it eagerly, and then, again, asked for oatmeal.  I told her we didn't have any more.  Within about a minute, she came back over, saying "Want oatmeal!"  I again told her we were out of oatmeal.  Over and over she came back and asked for it, varying things a little by sometimes saying please, sometimes saying "Want oatmeal right now" and sometimes just bringing me a bowl and looking sad.  I took her a couple times to the bin where we keep the oatmeal to show her there wasn't any, I offered her several alternatives, I told her we'd go later to the store and get oatmeal, but as always, none of that worked.  She seemed totally convinced that if I really wanted to, I'd have some oatmeal to give her.

It made me think that Janey probably thinks I can do anything I want.  Hey, sometimes I tell her no to more chocolate or candy, and then in a few minutes, suddenly I give in and give her more---so what's different about the oatmeal?  People can say no, and then it changes to yes!  Or it might not even be that complicated.  It might just be that she truly pictures that I can make things happen, make things appear.

The theory of mind bit comes in here.  I am quite sure Janey doesn't get that what is in her mind isn't public.  She'll often come over to me with a remote, and I'll say "What do you want to watch?" and she'll say "That one!"  I say "Which one do you mean?  I don't know what you are thinking!" and she'll get increasingly frustrated---saying "THAT ONE!  WANT THAT ONE!"  In her mind, I'm sure it's perfectly clear, and she doesn't get that I don't know what she means.  Sometimes, of course, she does ask for things by name, but I think that's when the name is coming easily to her verbally.  Often, words don't, but in her head, there's a picture or in her case, more likely, some bits of dialogue or music, and she figures that's good enough.  This probably isn't helped by the times I really do know perfectly well what she means, and still try to get her to say it.  She'll bring me a soda bottle and a glass and look at me beseechingly, and I'll say "Tell me what you want" when it would be obvious to anyone what she wants.  So she might figure that the pesky insistence on saying out loud what she wants is some kind of quirk of mine that I pull up at certain times.

When Janey is crying or screaming or hysterical, I'm pretty sure then too she thinks I know what is wrong, and am just not helping.  And even if what is bothering her is something I'd have no way to help, like a noise on the street or it being the weekend when she wants to go to school, she doesn't get that.  I could help, in her mind, if I wanted to.  I'm just not, for whatever reason.

I need to try to keep this view in mind when talking to Janey.  I think I'm going to try not to ever pretend I don't get her when I do, just to get her to say the word, and I'm going to try to think of a way to tell her when I can't do or know something.  I had some luck a few times with a song I made up for the car when she would ask for things in the car I couldn't get, like toys that were at home or for me to cook bacon or something.  I'd sing "IT'S IMPOSSIBLE...to make bacon in the car" repeated 3 or 4 times, and after a while she'd quote that.  Maybe if I keep my message consistent, she might, if not understand, at least know what to expect from me.  I'm going to try.