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!

No Questions Asked

It's almost impossible for me to write legibly by hand.  If I had grown up in today's world, I'm quite sure I would have been diagnosed with dysgraphia or something similar.  As an adult, this is not a huge problem.  I type everything---out sick notes, grocery lists, birthday greetings---whatever needs writing.  But lately, I've been playing out an extended analogy in my mind.

What if every day, all day long, I was being asked to write by hand?  What if almost every waking hour, someone handed me paper and pencil and told me to write?  What if this happened in every context---out of the house and in?

What if I were offered tool that were supposed to help me write, but that still left it very hard to do---tools like special pens, nice smooth paper, a great writing desk?  What if, when I resisted these tools because they still left it very hard for me to write, instead of backing down, I kept being offered them, with new tools being tried all the time?

What if, once in a while, if I put all my effort into it, I wrote fairly well?  What if instead of people accepting this as something I could do when conditions were just right, they took it as proof I could write well ALL the time if I tried a little harder?

What if I had to write to get the things I wanted, even if people knew perfectly well what I wanted?  What if I brought someone the food I wanted, or the video, or the toy, and instead of just giving me what I wanted, they insisted I write it down?

What if I were feeling upset, crying, screaming, and people came over and said "If you could just write down what was wrong, we could help?"

Of course, the writing here stands in for Janey's speech, and in a large sense, her communication overall.  All day, everyone around Janey prompts her to talk, asks her to talk, cajoles her to talk.  People try getting her to talk by means of iPad programs, picture exchanges, sign language.  When she does speak well, people assume that means she CAN talk and therefore, needs to talk more.  People prompt her to "use her words" even if it's pretty plain what she wants.  And people, when she's at her most upset, beg her to tell them what is wrong.

By saying "people" here, I mean, most of all, myself.  I have done all those things, often.  I constantly ask Janey questions, hoping for answers.  I start sentences for her, hoping she will finish.  I present her with alternatives to verbal talking.  When she does speak well, I latch onto it, hoping it is proof she will someday talk easily.  When she brings me a glass and a container of juice, I ask her what she wants.  When she screams, I say "What feels wrong?  Why are you crying?"

After my last blog post, I thought and thought about what I was doing.  And I decided to try to change.

For the last few days, I've done my level best not to do ANYTHING to try to get Janey to talk or communicate.  I've stopped asking her questions.  It's very hard to do.  I catch myself 20 times a day about to ask one, and quickly change it into a statement.  I'll say "What do you want to watch...um, I'll put on the TV and see what's on!"  or "What's wrong, sweetie...oh, uh...you seem very sad.  I will snuggle you"  I have been talking to her, more than ever, but talking without asking for a return conversation.  If I know what she wants, I either give it to her or tell her why I can't.

It's very early to say, but the results have been quite astonishing to me so far.  Almost immediately, I saw an uptick in Janey's talking.  As I wrote on Facebook, within an hour, she had spoken one of her longer sentences to me---"Want to snuggle on Mama's bed with some cheese?"  I've heard a few of the rare non-asking for things statements---outside, she saw one of our resident stray cats and said "That cat is Tommy!"  (it wasn't Tommy, but that's beside the point!)  When we wants to watch something to TV, I scroll along all the possible choices without comment, and she yells out what she wants "Want Uncle Rusty!" (a favorite episode of Little Bear) or "Want quilt one!" (her favorite Courage the Cowardly Dog)

This trial of not asking for communication is part of a larger general new philosophy that Tony and I have started, without really anything as formal as talking it about it or putting rules to it.  In general, we are trying to keep the stress level of Janey's life as low as possible.  From what those with autism that are able to communicate their feelings say, just living through a day with autism can be very stressful.  Maybe my job is to not add any stress, to reduce stress wherever I can.  This new attitude started while Janey was in the hospital, dreadfully sick.  Janey has been dealt a hand in life that is not always easy.  I hope this experiment, this test of reducing the pressure on her in a little way, helps her.  If not, we'll keep trying, to see what does.

Progress Despite It All

Although this summer has been tough in many ways with Janey, I'm realizing it's also been a summer of huge progress.  The two may be connected.  The last week has seen a big decrease in the screaming and crying, and I'm able to relax a little and take stock of what Janey has been doing, and it's quite encouraging!

First, her speech.  She has been talking in ways we haven't heard before, or have heard only on very rare occasions.  A few examples---the other day, Tony took Freddy and Janey to Chipolte on the way home from getting Freddy at work.  After they ate (and Janey was good for eating, progress in itself!), Janey said "Do you want me to clear the table?"  All mouths dropped open!  That's usually what one of us says after a meal there, but who would have ever guessed she'd say it!  Tony gave her some napkins to clear, which made her very happy.  Another time we were all in the car, discussing our favorite foods (not an uncommon topic in our food obsessed family).  All of a sudden, Janey yelled out "Indian chicken!"  She actually joined the conversation and told us her favorite food!  A few nights ago, she craved some Chinese rice (fried rice) and Tony ordered some.  We all walked to the square near us to pick it up, and on the way home, Janey jumped up and down excitedly and said "I'm almost having Chinese rice!"  I know I've NEVER heard her use a word like "almost" correctly before.  We were thrilled.

Janey has also started to seem to differentiate between family members more than ever before.  Usually in the past, it seemed like we were fairly interchangeable to her.  But this summer, we have been assigned roles.  If  Janey wants Netflix or a video, only I am able to put it on.  But if she wants food, that's Daddy's job.  Last night as I opened the fridge, she sneaked out a jar of mayonnaise, and immediately took it over to Daddy to see if he'd give her some, sliding past my attempt to grab it.  She knew he was far more likely to give in on that one than I was.  She has also been calling the boys by name.  The other day, William came into the back yard where she was playing, and she called out loudly "Hi, William!" which made him very happy!

Janey is also showing an interest in drawing and writing, which is totally new.  She has never drawn anything recognizable, but she might come by that naturally, as neither have I, really!  But I got her a sketch pad the other day, which she was eager to use.  Below is the very first thing she wrote in it...

Yes, it's a J!  I was so happy.  You can see an example of my artwork in this next picture, where I asked Janey to put the mouth on a face...  (I drew the face, and Janey drew the mouth)

I was happy she got what I meant, and added the mouth quickly!

Lastly, Janey is showing signs of wanting more independence.  This one is harder for me to accept.  For her whole life, Janey has held my hands when outside anywhere but in our own driveway or back yard.  She has been just too prone to running away or doing impulsive things for me to let go.  However, lately she is constantly dropping my hand and wanting to walk on her own.  I started giving in, slowly at first, but I'm realizing something amazing---she is staying with me!  She's walking on her own at my pace!  It still makes me very nervous, but she is almost 9, and it makes sense she wants to not always be holding my hand.  She loves to do things like walk along a crack in the sidewalk or run her hands along trees or walls, and now she can do that.  This morning, as we walked to summertime school, we got to a place where we have to walk next to buses.  This is where I usually grab Janey's hand, and as I was about to, she took my hand.  It showed me she is aware of safety and her surrounding more than she ever was, and knew we were in an area she needed help with.

So, despite the very tough times here and there that this summer has brought, I hope, and I shouldn't even write it to not jinx it, but I'm knocking on wood---that at some point in the future we may see the summer of 13 as a turning point.  I hope so---I dream so.

Standardized Testing For Kids Like Janey?

I read this article yesterday  (thanks, Mary Leonhardt!) about developing standardized testing for the kids like Janey.  I hadn't really understood how the whole No Child Left Behind bit affected kids with severe intellectual disabilities like Janey.  The article explained that it's allowable for 1% of students to be tested in an alternative way---to not have to take the regular state tests, which here in Massachusetts are called the MCAS.  Most students with special needs do have to take the tests---the article estimates that only 10% of special needs students are in the overall 1% that don't have to take the tests.  I don't know officially that Janey is in that 1%, but I am quite sure she will be.  The article discusses a program being developed to modify the regular tests so even that 1% can be tested.

What do I think of this?  Well, my first impulse was that it's crazy.  No matter how much you modify a math test that has concepts on it like algebra or a English test that has you analyze a poem, Janey is not going to get it.  And more importantly, it's a waste of everyone's time and money to work on her to get it.  If you put hour upon hour upon hour into it, you might get her to somehow point to a picture relating to what the poem is about with some degree of accuracy, or parrot back an answer.  And what in the world is the good of that?  That is time and money and energy that could have been spent teaching Janey something she COULD learn---self-help skills, letters, iPad use, things like that.  My second impulse is that this is another example of people not really getting low functioning autism.  There is a larger gap between a child like Janey and some children I know with Down syndrome or higher functioning autism than there is between those children and "typical" children.  I completely believe in including kids that learn differently or more slowly, in having them take the tests with accommodations.  But learning differently or more slowly is very different than not being really able to learn the material at all, or learn it in a way that's going to make a difference long term.

Here's an example.  I have terrible handwriting.  I mean---terrible to the extent of being unreadable.  I always have, although it's gotten worse in this age of keyboards.  Now say there was a test back in my day that required writing an essay.  It would be crazy to say I shouldn't take the test because my writing isn't readable.  That is a case where an accommodation makes complete sense.  I could use a keyboard, or dictate the test, or be given a lot of extra time to try very hard to print the letters in a readable way.  And the result would be meaningful.  It would test my writing ability, without having a disability stand in the way.  (and I'm quite sure in today's world I would have a diagnosis for my inability to write legibly, or to keep an organized and tidy desk or locker)  I would be able to move forward with writing, and use it in my life.  But let's say it was Janey instead.  Janey can't read.  She can't write.  She doesn't consistently know her letters.  She doesn't know what an essay is.  She can't in any meaningful way at all even understand what would be expected for a test like this.  Now, I'm sure you could figure out a way to somehow completely modify the test so she could do LOOK like she was somehow being tested.  You could read her a story and have her point to pictures.  That might look like something useful on paper, but in reality, is it?  Does the test result mean anything?  Does it do anything but satisfy some sort of quota or make a state look good on paper?  I would say---no.  So yes, accommodate if there is something standing in the way of someone showing their skills.  But don't "accommodate" if the skill simply isn't there, and never will be, or won't be unless some huge intermediary steps are taught first.

This reminds me of all the times I've been failed by parenting advice.  Janey and kids like her, the other 1%, don't fit into the regular rules, the regular plans.  Accepting that, and doing the best we can for kids like her without forcing them to being tested in meaningless ways, is how she will move forward.