Saturday, March 26, 2016

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!

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