Thoughts on vacation and school

Janey's April vacation was a good one.  We didn't have a lot planned, and most of the days were just Janey and me hanging out, watching TV or reading or playing outside.  We had two nice visits with my friend Maryellen, who Janey adores, and one outing for shopping (clothes, which Janey tolerated for FIFTEEN MINUTES!) and ice cream, but mostly we just did not much. 

Janey doing one of her favorite things!

By the end of the vacation week, I noticed something I often notice after times when Janey and I are at home a lot together.  Her talking increased a good deal.  She had been in a low ebb for talking, but by weeks end, I was hearing longer phrases and new words.  At one point, outside, I said "Look at my flowers, Janey!" and she said "The daffodils!", a word I had no idea she knew.  She was stringing together thoughts, like "want to go on the bed and snuggle under covers?" It just felt like we were communicating better than we had in a long while.

Janey's outbursts were short during vacation, and pretty easily dealt with.  I read a book about adopted children with attachment disorders.  That isn't what Janey has, as she isn't adopted and I don't think she has an attachment problems, but the strategies for dealing with that problem interested me, and weren't too different than I do anyway.  Mostly, it involves keeping calm when the child is not calm, and not ever using things like time out---instead, giving more attention when behavior is tough.  I've been trying that, not as something I'm going to always do, but trying it, and it is working well.  When Janey screams and bites herself, I say "I think you need a snuggle time with Mama" and often, very quickly, Janey is happy and smiling.  With her outbursts, it's a matter of whatever works, and it was nice to have that working for now.

I was interested to see how Janey did with school starting again.  I very much like Janey's teachers and therapists and everyone I've met in the autism program at her school.  But sometimes, I'm starting to wonder if just the whole structure of school is tough on Janey.  School is not really designed for someone like her.  I don't think she enjoys ABA, or any kinds of art type activities, or almost any structured learning.  She likes music, and being outdoors, and taking walks.  They do those things at school as much as they can, but she is not the only kid in her class, and they are charged with teaching her, not just keeping her happy.  

This morning, Janey was not at all eager to go to school.  That is new for her.  She almost always like going places, almost any place, and she's always been eager to get on the bus.  Today, she asked for a car ride right as she got up, and was very upset we told her it was a school day.  She seemed to resign herself after a bit, but as I watched her head to the bus, she looked grim, stressed.

Sometimes, that mean voice in my head which is my own judgemental side says "if you were a GOOD mother, you'd homeschool her!"  Well, that is not going to happen.  Janey needs school, and I need the respite that school provides.  Even with a good vacation, I was extremely ready for Monday to come and school to start again, and I feel quite sure Janey would be very sick of being home with me after not too long at all.  But I wonder what education for Janey would look like in an ideal world.  I am so lucky in that I honestly have never had a teacher for Janey I didn't love, and who I didn't feel loved Janey.  That's not the issue.  It's the whole structure of school.  School is set up for learning, not for life skills or for learning to do things that will provide lifetime happiness.  The goal at Janey's school, which has two parts, really, a "regular" part and an autism part, is stated as "We believe every student will attend college"  I do think they realize this is not a realistic goal for Janey, but my point is that the "normal" school model seems to be more modified than replaced when designing programs for kids like Janey, and that just doesn't always make sense.  This is a systemic problem, not a problem with Janey's specific school.

I'm doing a very lot of thinking lately about school and Janey, and about how I can be prepare her for the future.  I want to honor who she really is in this preparation, not a mold that doesn't fit her.  I hope I can figure out a way to do that which will work for her and for us.

Summertime School and not "using your words"

I've always disliked the phrase that people often say to kids "Use your words!"  I know the intent---to remind kids that when they are angry, they need to express verbally what's bothering them---but long before I had Janey, I felt that it was a kind of accusatory way to talk to kids.  When they are upset, it might not be possible for even the most verbal kid to think of how to phrase what is upsetting them, and I think a kinder approach would just be to hug them or be sympathetic.  But now, with Janey, I hate the phrase, because Janey CAN'T use her words.  And it's not because she doesn't have any words.  She has lots of words, but she can't use them, mostly.  She can recite them, she can plug them into set phrases, but she can't use them, almost ever, to tell me what's wrong or why she is sad.

That's a big part of why things like summer school are so nervewracking for me.  Janey started summertime school today (officially, it's Extended School Year, or ESY, but for Janey, I call it summertime school).  I did better than other years.  I didn't lie awake for hours last night worrying about today.  I know enough people that will be there to know at least someone will have an eye on her, and I was thrilled today to find Mr. Ken, Janey's ABA specialist, waiting there for us.  That made it like handing her off to a dear friend.  I didn't know her teacher, but met her today, after no-one knowing who she was for a good long time.  Everyone meets outside, and it's about how you'd picture a very lot of autistic kids being placed into the classes on the lists.  A lot of the kids are not eager to say their names, or can't.  But I was impressed at how relatively calm everything felt.  I left without extreme nervousness.  I know Ken will tell me how it went, honestly, and I know that the other 5 or 6 people I saw there today that know Janey (some of which I don't know, they just know Janey from other years) will be seeing how she's doing.  But Janey can't tell me how she felt about school.  If something scared her, big or little, she won't tell me.  Maybe there are noises in the school she doesn't like, or they have a routine that bothers her, or another kid might hit her.  None of those would be huge things, but without being able to hear about them and talk to Janey about them, they might very much be impacting how she is feeling about school, without me being able to help.

As we parked this morning to walk in, for one of the first times ever, Janey tried to fight me on walking to the school.  She tried to go the other direction, to a playground she could see down the street, one she liked last year, with a water sprayer.  Or I assume that is what she was resisting.  It could also be that she just didn't remember what summer school was, and was upset we weren't at her regular school (summer school is in a totally different place).  She tried again to pull away from me when we walked past a door that I think they use to go to swimming, which she also loved.  It took all I had to keep her walking in the right direction, which was scary.  She gets stronger all the time.  I had to use my patter---my non-stop talking routine to keep her distracted and moving "Hey, let's head to school!  I think we might see Mr. Ken there!  We might see some of your friends there!  I wonder what they will have for breakfast?  I think you'll have a great time! Let's keep walking!"  It worked, for now.  There will come a day, I am sure, when I won't be able to get Janey to go where I want her to go, physically.  That day scares me to think about.

And so, she's off.  She's off for the day, and I'm home, and I will never know exactly what she did all day.  I might get notes, I might hear parts of it, but with a child that can't use their words, so much of what they do out of your sight is a mystery.  I just have to hope, to fervently hope, that she is happy and cared for and well.

Why doesn't Janey talk more?

For some reason, this question was hitting me like a ton of bricks this weekend.  Janey CAN talk.  She can say a lot of things.  She understands speech quite well, at least basic speech.  But her talking is very, very limited.  She uses phrases she's used before almost always.  A unique sentence from her, once analyzed,  almost always turns out to actually be delayed echolalia---something she's heard from a video, song, school, etc.  She learns new words very slowly.  An example is "towel", that I wrote about before---for years, she said "scarf" for "towel".  Now she says towel pretty consistently, but why did that take years, when she can memorize huge chunks of dialogue in seemingly a day?  And why are the sentences she say often so ungrammatical?  For example, they almost always start with "I want" and then use phrases that don't agree or fit, like "I want snuggle on Mama's bed", one of her most said sentences, or "I want go to visit Pino" (her uncle).  Why does she cry sometimes for hours because she can't find a way to tell us the simple thing she wants or what is bothering her?  Why does her speech not progress, despite great speech therapy and being around talkers and going to school?  Why is it so hard for her to answer questions?  Why does she often call people the wrong names, although I'm quite sure she knows their names?  For example, this morning when saying goodbye to me at school, she said "Goodbye, Ms. Janet!" (the name of her speech therapist), and in fact, all weekend almost everyone was called Mr. Janet, even Tony.  It is vanishingly rare she uses William or Freddy's name.  Why does she request things using a question?  The example of that is when she likes a song she hears in the car from my iPod.  She says (frantically) "DO YOU LIKE THAT SONG?"   That means "don't let the song end, replay it fast, I really like it"

There must be something just mixed up in the speech center of her brain, something that makes straightforward speech very tough.  I wish I understood it.  A strange example of the crossed wires or whatever they are was this morning.  She liked a song in the car, and said her usual "do you like that song?" but I was confused as to whether she meant a song that just had ended or one that just started.  She started screaming "Christmas!  Christmas!  Do you like that song?"  I hadn't played any Christmas songs, but I took a guess and played "Living on Love", an Alan Jackson song that has the word "wings" in it.  I think that was it---she's heard "wings" mostly in Christmas songs about angels.  Somehow, instead of the many straightforward ways she could have expressed herself, that was how she did it.

When Janey gets upset, we are trying more and more to encourage her to tell us what is wrong, but sometimes that almost seems mean, because it's so hard for her.  It just doesn't seem to come naturally to her to translate feelings into words.  We give her choices, starting the sentence for her "I am crying because I am...." and she will sometimes plug in "angry" or "sad", but I think those are usually guesses.

Lately she loves Happy Meals, but despite us using that word for them a lot, she asks for them by saying "I want chicken nuggets.  I want French Fries.  I want chocolate milk", breaking down what is in them.  Then we try to get her to say if she wants Burger King or McDonalds, but she will almost always pick whichever we say second in the question.  If she does mention them on her own, it's always "Old McDonalds", from the song.  When she makes an association like that, it's very hard for her to break it.  For example, she usually calls her ABA specialist "Mr. McKen" although his name is Mr. Ken, but both her classroom teachers last year had names that started with "Mc" and I think she came to see that as some kind of teacher preface.    It seems like once she learns a rule, she overgeneralizes it.

Sometimes I feel like if I could break the code that Janey's mind uses for speech, I could teach her things much more easily.  I wish I understood what the speech center of her brain is like.  I daydream often that the Vulcan Mind Meld is real, and I can join minds with her and figure out what goes on inside her brain.  I think it's an interesting and confusing place.