I hate old videos

We are not big video-making people.  We haven't consistently documented any of our kids' lives, but we've done a few video taping sessions here and there.

We did a fair amount the year Janey was two.  Or I remember us doing a fair amount, and I've seen them around.  But I don't watch them.  I watched a bit of one, once.  I started to scream, watching it, and begged Tony to turn it off, which he did.  It was Janey, pre-regression.  She was talking.  Talking as well as any two year old talks, better than some.  There were slight oddities to her talking, but it was talking, fluid talking.  Her eyes were engaged, she was lively and cheerful.  She was pretending to be the singer in a band the boys were making, and if I can recall, she said something like "This is Janey and the Amazing Band!"  Not echolalia.  Regular, creative talking.

This morning, Tony was looking at an old private group he'd created on Facebook, one to keep track of Janey's health issues.  At one point, he'd uploaded some videos of Janey onto it.  They weren't dated, but I would guess she was 6 or 7 in the video I watched this morning.

What I knew, from reading old blog posts and from what I can remember, is that after her big regression at age 3, Janey's talking at one point recovered slightly.  It was in no way up to age level, and I think I'd convinced myself it was about like it is now.  The video showed me I was wrong about that.

The video starts with Tony filming our cats (we had more then---four of them).  Then Janey walks in the room.  She is carrying a frozen pizza.  She says "Want some pizza?  Open it!  I want pizza!"  She sets down the pizza and repeats that, and uses sign language a bit, or her own version, pointing to herself and then opening her hands to show "open"  I say "But what is the magic word if you want something?"  She repeats "pizza!" and then I start it for her---"Ple....." and she says "Please!"  Then, I say "Okay, I'll make pizza, but first, can you say your name for the video?"  She says something I can't understand at first, but then says "I want a banana milkshake!"  I sometimes call her Banana Pancakes or Banana Milkshake as a nickname---no idea why, but I still do.

It isn't just the talking in this video that's far more fluid and easy to elicit than it is now, it's her whole demeanor.  She is more relaxed, more engaged, more lively than I've seen her in the last 3 or 4 years.  She is, to put it plainly and in terms that I hope don't offend anyone, closer to typical, closer to what we call normal.

I fool myself a lot, or pick what I want to think about, or to be easier on myself, simply don't think about things a lot.  I know in my heart Janey's talking is decreasing over the years.  She talks less now than a year ago, much less than maybe 5 years ago.

She is not losing ground in other areas.  She understand more all the time, from what she can show us.  She is able to do more for herself.  She is calmer, mostly (although we had a rough weekend at points, and if I am again brutally honest with myself, we have a lot of rough weekends)  But she is more affected outwardly by her autism than she used to be---I have to admit that.  And it's okay.  It's truly okay.

The latest thing that parents who blog about autism often seem to be called is "martyr parents".  That hurts.  I don't ever, ever, ever want to seem like a martyr.  And I don't feel like one, I don't think I am one, even if I dig into the depths of my soul.  It is my great privilege to be Janey's mother.  I love her more than I can possibly state.  But that love includes wanting her to be able to express herself, to be engaged in life, to be open and able to enjoy what life has to offer.  I can't see her decreased talking, and more than that, her decreased engagement in others, as a positive.

Should I make myself watch old videos, to force myself to see what I don't want to see?  What good does it do?  I don't think that anything I can do, or the schools can do, changes Janey much.  Or that is wrong---what we CAN change at times, and I think we have, is how accepted she feels, how much of her time is spend screaming or crying or otherwise unhappy.  That is less than it was  in the past, for the most part.  But despite many, many years of speech therapy and ABA therapy and excellent teachers and aides and therapists and a family that does whatever we can to help her communicate---as the years go by, Janey talks less and less.  There are moments that stand out, great things she says, but I would say this weekend she said a total of about 5 different phrases.  There was "want to go for a car ride?", "want to snuggle on Mama's bed?"  "want a TV show?", "want a shower?" and "want shoes on?"  She did not answer any questions.  She did not label anything, or comment on anything, or say anything we haven't already heard many times.  This weekend was pretty typical.

I hate old videos.  I hate feeling like somewhere along the way, not just once but at least twice and probably more times, Janey lost ground she had gained.  I think I'll wait another decade or so before watching old videos again.

Full Circle McDonalds Trip

This weekend, we spent a lot of time organizing our bedroom, to prepare for a badly needed new mattress.  Some of the work involved heavy lifting and cleaning, so we decided I would get Janey out of the house so Tony could do the work without Janey needing Daddy's attention 100% as she usually does on weekends.  I took her various places, one of which was a McDonalds.  During the meal there, I kept flashing back to another trip to that same McDonalds.

Here's a blog entry about that long ago trip, when Janey was four.  (LINK)  It's a trip that has stayed in my mind for all those years because it seemed like a dividing line.  Before that trip, I often took Janey out and about.  I ever said in the entry "Usually she loves to shop", which surprises me a bit now to read, but I vaguely remember as true.  Janey did, when she was very little, like to go shopping and to be out and about.  We often went to McDonalds and ate inside.  But that day, she had a violent reaction to something, and for one of the first times, tried to bite me, and succeeded in biting her own lip and the back of the chair.

After that trip, I didn't take Janey out much on my own ever again.  It wasn't safe.  We did a trip here and there, but overall, I just didn't.

Now, eight and a half years later, I do again.  Finally again I feel safe taking her places.  I have enough confidence in her ability to stay calm and my own ability to calm her if she doesn't stay calm that we are going places, fast food places and short trips to stores and yesterday, swimming at a Y for summer autism free swim.  The trip back to the McDonalds was smooth (besides them giving me a burger instead of grilled chicken in my sandwich and me just eating it rather than trying Janey's patience by returning it).

However, the trip also highlighted to me another change.  Janey is not talking much lately.  Her calmer behavior seemed pared with less activity overall.  During the meal, she said exactly one thing, an echoed "23" when I commented that the number of the marker we had on our table was 23.  She ate in silence, despite my best trials.

When I read back about the long ago trip, it is hard in some ways to read what she said long ago after the trip----"I heard a clicking sound, and the clicking sounded like BOOM! I heard a footprints sound"  All these years later, a sentence like that is basically unheard of.  It's quite hard often to realize that despite many, many years of speech therapy, ABA and schooling and just getting older, Janey talks substantially both less and less complexly than she did soon after her diagnosis, even during periods of more talking than we are in right now.

I don't think the two are connected.  I don't think talking less and being calmer go together by necessity.  At least, that's not supposed to be the plan.  It's supposed to be that talking, communication, can make Janey calmer---that if she can tell us what is bothering her, we can help.  But back then, she told me that long sentence that I thought was about what was making her upset, and it didn't help a bit.

I don't get to decide, of course, but what if I could?  What if I could pick a calmer but less active and communicative Janey or a more communicative but less calm Janey?  Which would be better for her?  I have no idea.

Another thought that has crossed my mind---maybe Janey talks less now because we have learned more about her.  Maybe she doesn't talk when she doesn't feel she has to.  She isn't into talking just to chatter---she talks when she has something to say, and maybe by understanding more of what she needs, she doesn't need to tell us.  Is that good or bad?  Again, I really don't know.

Whatever the reasons, the reflection on the two widely separated trips to McDonalds has left me with more questions than answers.

Searching for words

Last night, Janey said "I want to watch...." Then she stopped, and I could see she couldn't find the name of the show she wanted.  She started over "I want to watch...", and then did the same thing several more times.  Something about how she was saying it made me not jump in.  She had the look and the sound of someone who is searching for a word, who knows what they want to say but just can't quite bring the word up that moment.

When she started to look upset, which took a few tries, I did what I often do, and gave her a sentence with a blank.  I said "The show I want is named..."  I'm not sure why, but that sometimes makes it easier for her to fill in.  But this time, she didn't.  She kept looking at me, and the look started to break my heart.  It was lost, almost scared.  It was a look that said "Why can't I say this?  Why is what I need to say so hard to say?"

Janey's talking goes up and down.  There are times she talks more, and times she talks less.  We're in a low ebb right now, quite low.  I don't panic over this, because over and over I've seen that the talking will come back to higher levels in time.  But somehow, this felt like the first time she was aware of her own trouble finding words.  I could be reading too much into her look, but over time, I've gotten pretty good at reading her face.

After a few more attempts by me to give her a fill-in-the-blank, she said "The show I want is the show".  I then did what I had hoped to avoid.  I started listing shows she might want---"The show I want is..Angelina?  Blue's Clues?  Beauty and the Beast?   Kipper?  Wonder Pets?  Dora?  Barney?  Courage the Cowardly Dog?   Backyardigans?"  She stopped me there and said "Backyardigans"  So I put that on, and she seemed fairly content.  But still, I got the feeling that she simply was tired of the whole thing, and that she picked a show that didn't sound bad, not the show that she was really thinking of.

I thought about this incident a lot last night and this morning.  I wondered how I could have handled it better.  I wish she could manage the TV remote and pick the show herself, but it's so complicated to use Amazon Fire TV to pick a show that might be on Amazon Prime, Hulu or Netflix, that might be a video we've bought or one that is on the air---all of us have trouble with it.  I could try to get her to watch videos on her iPad instead, but she is very clear when she wants the big TV and not the iPad.  I could have a page of pictures of shows she likes to point to, but she rejects that kind of solution at home almost always, and even if she didn't, the list is limited to ones I think of, not all the ones that exist.

What I really wish is that she could learn more word retrieval skills.  She has a very good speech therapist at school right now, but her time with the therapist is limited, and I have the feeling there might be specific kinds of therapy that most help with word retrieval.  A few months back, I started trying to find a place for her to get outside speech therapy, and found it was far from easy.  There are lots of places that do autism therapies, but they are almost all exclusively ABA, and most word with kids under 13 only.  Janey will be 13 in two months. I have found iPad programs specifically to help with word retrieval, but they are aimed at people without intellectual disabilities, and quite honestly are far beyond Janey's abilities.

Before school this morning, I stopped Janey and said to her "I know sometimes it's hard for you when you can't find the word you want to say.  That must be very frustrating.  I saw how sad it made you last night.  I want to help you with that, and so does Daddy, and everyone at school"  I have no way of knowing how much she understood, but I am glad I said it, and she listened, and smiled at me.

There is so much about Janey that is mysterious to me.  How often does she settle for shows she doesn't really want, food that isn't what she is aiming for, songs playing that aren't really the song she wants, because she doesn't have the words?  Why can she sometimes talk so much more than other times?  How is it that she can remember endless song lyrics, or show dialogues, but not sometimes simple titles or names?  How can I help her?  And sometimes I ask myself the hardest questions of all---how is this fair for her?  Why does she have to struggle to be understood?  What would her life be like if she could talk more readily?  Those last ones don't have answers, I know---or if they do, they are beyond my own word retrieval skills.

Baby Bubbles

It's hard to explain exactly, but lately we are seeing something in Janey that is new and wonderful.  She is talking a little more, but it's not just that---it's a change in how she seems, in how she connects.  It's not there all the time, and it can be hard to describe, but when we see it, Tony and I look at each other in amazement.

I'll try to describe the latest incident.  Janey came home from school the other day very upset.  It seemed she was in pain---she was grabbing her belly and twisting around a bit.  It looked to us like gas pain, or pain from constipation.  We eventually gave her some Tums, hoping to help her feel better, and after a while, she did seem to feel much better.

As we were lying down with her at bedtime, we were talking about the Tums.  I said to Tony "I think they work by taking big bubbles in the stomach and breaking them down into little bubbles, so they can get out"  I wasn't talking to Janey, or doing what we sometimes do, talking to Tony in terms we thought Janey would understand, so she could listen indirectly.  Doing that often seems easier for her than talking to her straight on---it's like there is less pressure, so she hears without feeling pressured to respond.  But that's not what I was doing right then.

Right after I said what I said about the bubbles, Janey pointed to her belly and said "Baby bubbles?"  She said it exactly like most people would reply, in a questioning voice, like she was looking for confirmation she understood correctly.  Tony and I looked at each other in amazement.

This might not sound like a big deal to someone who doesn't know Janey, but it was something in several ways we have hardly ever seen.  First, she responded with appropriate timing---no delay.  Secondly, her tone was right on---not echoed sounding or sing-song or anything else, but just questioning.  Thirdly, she used a word we hadn't used, "baby" instead of "little"---so she wasn't quoting or repeating, she was using a synonym to clarify.

It's this little kind of thing we are seeing more and more of.  Janey seems to be, for the lack of a better word, tracking our speech more.  She seems to be following what we say and processing it in real time.

Another story---kind of a funny one.  Janey's uncle Joe often asks her "What's my name?"  It's something he did with all three kids when they were little, as a way of making conversation.  With Janey, he's been asking her that for years.  She replies or not, depending on her mood.  However, the other night, Tony was out with Joe and Janey in the car and I got a call.  Tony said "Are you sitting down?  You won't believe this"  What had happened was that Joe asked Janey, for maybe the ten-thousandth time in her life, "What's my name?" and Janey replied "You forgot your name?"

That answer---wow.  We joked that she must have been sitting on that reply for years, waiting for the right time.  It's an amazing reply to us---it shows she understand the meaning of the word "forgot", that she gets that someone would ask a question to get information, and most of all, it breaks away from a script that has been years and years in the making.

For a long time, Janey's speech didn't progress.  Our theories of why it suddenly is---Janey's having a good year of school and a good year of health.  Things have been steady and fairly upbeat.  She has a great team at school---a terrific teacher, an ABA worker we get super reports about, and a speech therapist we met her at IEP meeting that seems to get Janey in a way that we haven't seen in a speech therapist for a long time.  Those elements together, along with Janey herself maturing and learning, seem to have prompted progress where we hadn't seen it for years.

I hope very much this speech and understanding trend continues.  I am not being pessimistic but rather realistic in saying it very well might level off or regress after time---we've seen that pattern often.  However, knowing that she CAN talk and understand in the way she's been showing---it's wonderful.  It will keep us working.

In the larger picture, I want to get this out there partly to give hope to others.  There is so much emphasis on early intervention, on "crucial stages".  There is always a feeling that the necessary therapy has to happen RIGHT NOW, or never.  Janey is the proof I need to say that isn't necessarily the case.  She's making progress now, at age 12, at a rate we haven't seen since she regressed at 3.  It might not be the kind of progress that you read about, the "miracle cures", the breakthroughs, but it's progress non-the-less, and we couldn't be prouder of her.

All Are Welcome---except, of course, when they aren't

As I made a depressing round of calls this week to try to find a source of outside of school speech therapy for Janey, as I once again looked at summer camp opportunities and realized that the Extended School Year program at the public schools was really her only option, as I thought about how restless Janey is on the weekends, I did some thought exercises.  How would we feel, in today's society, to think that activities, programs, lessons, camps, enrichment opportunities, all those things that are "open to everyone" are in fact closed to one small group of people?  How would we feel knowing that we exclude with polite speech and "of course you understand" and "we aren't equipped to deal with that sort of needs" and "we staff for children who can be in a 4 child to one adult ratio" and "we generally deal with younger children with more potential to someday return to regular classrooms (an actual quote)" and "we'd be happy to help you if you could hire a one on one aide to accompany your child" and many, many other such ways to say NO---we don't include your child?  If this were done on the basis of sex or religion or race or nationality, we'd be outraged.  But because the child in question, the children in question, are autistic, labeled as "low functioning", not "able to follow directions"---well, that's just life.

And the thing of it is, I usually accept it as just life.  I am not a fighter.  I was not especially chosen to fight this autism fight.  I accept reality.  I say "of course I understand".

And the other thing of it is, I don't want Janey where she isn't wanted.  She is so sensitive to tone of voice, to the mood of a room, that she often bursts into tears at tense moments occurring on such TV shows as "Daniel Tiger's Neighborhood" or "Clifford" or "Yo Gabba Gabba".  These are shows aimed at toddlers and preschoolers.  If Daniel's mother is annoyed at Daniel, or Clifford upsets Emily Elizabeth, or the Gabba folk have a misunderstanding, Janey will scream and cry and pound the TV.  So how would she do at a program or camp or activity that just plain doesn't want her there?  How would THEY deal with her toileting accidents, or arm biting, or such?  Would she be yelled at, or worse?

Although I might not like it, I can understand why Janey might not be able to attend some things.  In an ideal world, she should be able to go to anyplace "open to all".  But she can't.  But I cannot accept that after making all kinds of calls,having two kinds of insurance for her, being willing to pay,  there isn't even a place that will provide her with speech therapy, or a social skills group.  I can't accept that she can't attend the city's rec department summer program FOR KIDS WITH SPECIAL NEEDS.  I still can manage to get upset that she had to leave the inclusion school we loved.  I hate it that the only respite we are referred to, over and over and over, is a program we tried, where we personally witnessed a staff of two, one working on checking in children, supposedly supervising approximately 15 kids with severe special needs---a program held up as "the best"---one that now does officially say they can't deal with kids that need one on one attention.

I'm feeling angry today.  And I will calm down.  I'll go back to understanding that "everyone included" doesn't mean that.  I'll go back to realizing Janey is a special case.  I already do realize, very much, that we are incredibly lucky she is welcomed and loved and embraced by the public school she attends---that I can put her on the bus each morning knowing she is cared for all day, and there is a summer program for her that does the same.  But in this city, this country, this place with the money to wage wars and send people into space and provide young sports players with equipment and travel, the city that gave my sons so many incredible opportunities, there is so little for those among us with the most needs.

Yes, no, the water---talking and not talking

One of the oddities of Janey's speech is that there rarely seems to be a time when she is using both "yes" and "no".  She'll use only "yes" for a long time, then only "no", then swing back---the idea of having both as an option seems to elude her, or seemed to.  Lately, we are hearing both, and it's wonderful.  "Yes" is still far more common than "no", but there are "no"s now and then.  Janey's teacher told me about one, realizing they are fairly rare.  He asked her to carry a communication sheet to breakfast with her, and she said no.  He was surprised and pleased, and respected the no.

It's interesting to me that what she refused was a communication aide.  It reminded me of a time when I talked to Janey about ways besides speaking she could use to communicate.  That led to one of the most striking and surprising moments ever with her.  I wrote about it here. (link)  Janey told me, clearly and firmly, "I know how to talk".  She said it twice, in a way she very rarely speaks.  That, and many other times she has refused very strongly to use AAC or iPad speech programs or anything of the like, has given me her strong opinion.  I love to know how she feels about issues, and I respect her opinions.  But I do wish I could help her better use her talking to communicate.

Here's an example.  Janey loves to take showers.  Our shower is jury-rigged in such a way that only the cold water works to change the water temperature.  You have to turn the cold water faucet in tiny increments to get the water hotter or colder.  We have it set on the hot water heater so it's never dangerously hot, but it can get fairly hot.  Janey likes the shower almost, but not quite, as hot as it goes.  She has seen from observing how I adjust the temperature.  Since she will often want a shower that's half an hour or more, I get out after washing her hair and just supervise.  While she's in there alone, she constantly tries to fix the water to be just the temperature she wants, and she constantly overfixes it.

When the water gets too hot or too cold, Janey says, every time, "Want to get out?"  And so I hold out a hand to get her out.  And she refuses.  And then I ask "Do you want me to fix the water?" and she repeats that in confirmation---"Do you want me to fix the water!"  And I do.  And then a minute---again.  And again....  The other day, I figured while I was standing around waiting for her to ask for help, I might as well try an experiment in getting her to say what she meant.  I said to her "Janey, you always ask to get out when you mean you want me to fix the water.  When you want the water fixed, can you say 'Mama, fix the water?' or something like that instead?"  Minutes later, of course, "want to get out" And so I played dumb and tried to get her out.  When she didn't get out, I pretended I didn't know what she wanted, and finally, she said "fix the water!"  And for the rest of that shower, she said it.

So---a breakthrough, right?  Wrong.  The next day, we were back to square one, asking to get out.  I reminded her, but this time, she just screamed and screamed.  I finally made her get out.  The next day, she cried before even getting in the shower, and didn't ask for the water to be changed---just stood there in water that had gotten too cold.  In the days since the first try, over the course of about maybe 20 showers, she has once said on her own "fix the water!" Now, when she asks to get out, I just say "You want me to fix the water" and do it.  When she's ready to get out, she gets out without asking.  In her eyes, problem solved.

That's a long example of a problem that comes up over and over.  It's extremely, extremely hard to get Janey to regularly use any new speech.  She KNOWS the words, she CAN say, she UNDERSTANDS them, but she doesn't use them.  She uses a few phrases for almost all purposes. Years and years and years of school speech therapy have not helped to talk more at all.  They have been, I can say pretty strongly, a complete failure in that department.

I don't know what to do about this issue.  I'd be thrilled to communicate with Janey in any way.  If she would use a speech program, or sign language, or typing, or writing, or anything, I'd move heaven and earth to work with her.  But she doesn't want to.  If I could find a kind of speech therapy that worked for her specific speech issues, I'd drive anywhere, pay anything (although our insurance would most likely cover it, IF I could find it) to make use of it.  But I've never had anyone seem to know how to help her use her verbal speech more.

So, for now, we accept what she can say. The shower talk attempt taught me something.  If I know what she means, I will go with that.  It does little good and sometimes much harm to try to force her to speak in a way that more people could understand.  It's more important for me to connect with her than to try to change her way of talking.  Still---there is the bigger world.  There's the thought of her without Tony and me, someday, the black hole, the staring at the sun, the thing we can't think about but which always is there in our minds anyway.  I hope she always finds someone to understand her, and I wish so much I could help her make that possible.

Does autism acceptance include respecting NOT communicating?

I like to think I'm pretty good at accepting Janey for who she is, at celebrating what she brings to the world, at not wishing she was who she isn't.  However, I've never quite accepted one part of her---her limited communication.

Janey's speech is a mystery to me, and to many who know her and work with her.  It's hard to describe how it is.  I use the term "minimally verbal", which I am not sure is an official term.  Janey says a few things readily.  She asks for food and TV shows by name.  She asks to "snuggle on the bed" and for a shower.  She says "want disc" when she wants to hear music, in any form.  That's about it, for communication type talking.  However, she CAN say almost anything, in echolalia form.  She can recite movie or TV lines with precision and expression, for hours on end sometimes.  She can also sing what I believe is any song she's ever heard, in tune and with all the lyrics, although never on demand, just when she wants to.  So it's not a matter of a problem with forming words.

Of course, speech isn't the only way to communicate, but Janey doesn't communicate much in other ways either.  She has shown violent opposition to iPad type speech programs or PECS type picture exchange talking, at least at home.  She has no interest in sign language.  She doesn't like to point out things, or gesture.  She can't hold a pencil well enough to write, and shows no interest in doing so.  She isn't able to type.  Overall, her communication of any kind is quite limited.

And I don't accept that well.  I want her to communicate with me.  I want it very much.

This picture captures the look I'm talking about pretty well.

A scene that has been repeated hundreds of times...Janey and I are doing her favorite thing, snuggling on the bed, the bed she calls Mama's Bed although it's been her bed for years.  She is very happy.  I am singing to her, or making my fingers pretend to be people jumping up and down, or reading her a nursery rhyme book, or often, just smiling at her.  And then I go and spoil it.  I pressure her to talk.  I say something like "How was school?"  Or I start a sentence for her "Today at school I...."  Or when I'm reading a nursery rhyme, I stop in the middle "Humpty Dumpty sat on a wall, Humpty Dumpty had a great....", waiting for her to say "fall.  And hundreds of times, the same thing happens.  Janey's face falls.  She gets a tense, distant look.  She looks scared, anxious.  We have gone from connecting to not connecting, strangely enough, because I am trying to connect in the way I want to connect.

What if I accepted Janey is communicating just as much as she wants to?  That would be a radical thing for me to accept.  But it might also be a realistic thing to do.  Janey's speech has never really improved from the time of her big regression, at age 3.  It's sometimes wobbled---gotten better for a while, and then worse for a while, but it's never stayed consistently better.  And this is despite speech therapy three times a week for eight years now, despite being in a family that surrounds her with talking constantly (none of us are very good at ever shutting up), despite so many attempts to give her alternative ways to communicate.  No matter what I've done, she communicates just about the same amount as she ever has.  So what if I just decided to stop pushing her to do more communicating?

When I think about it, Janey HAS communicated her feelings about the subject of communication itself pretty plainly.  That look she gives me, and the fits she has thrown when we insisted she "use her words", the anger reactions to apps like Proloquo---that's communication, communication I have chosen not to accept, not to hear, because I don't like the answer.  What if I respected what she's told me?  What if I gave her credit for communicating just as much as she wants to?  She CAN talk.  She CAN use an iPad.  If she wants to communicate more, well, she's shown me over and over that if she wants to do a thing badly enough, she does it.  So maybe it's time to listen to her, and stop pushing her.  Maybe eight years of her firmly telling me in her own way that she's communicating as much as she wants to should be enough for me to finally get the message.  Maybe sometimes acceptance means accepting that what our child wants isn't what we want them to want---maybe.

Third post of the day!

I've never written three posts in a day before now, and I don't think I ever will again, but I wanted to write about visiting Janey at Bradley Hospital while it was fresh in my mind.  I'm blogging lately for myself as much as anyone, to remember these eventful and challenging days accurately.

The couple pictures here are ones I found on the internet of Bradley.  You can't take pictures there yourself.  The room looks very similar to the common room of the ward Janey is on.  I'm not sure it's the exact same ward, but you can get an idea how nice it is.

We called this morning to make a time to meet with the staff at the hospital, and agreed on 11 am.  We left about 10, thinking the drive was an hour, but it was actually more like an hour and 15 minutes, which was fine, but good to know for the future.  It's a pretty drive at the end, through Providence, a city I've never spent much time in, although both my parents and my sister have lived there at points in their life.  It's great the hospital is south of Boston instead of north of it, as that avoids the horrible traffic that driving through the city always involves.

When we got to the hospital, we had to show ID at the main desk and wait for someone to come get us.  Everything is very, very secure there, which we don't mind at all.  It was striking at Boston Children's Hospital how very UN-secure everything was.  It was only on the weekend you had to show any kind of visitor's badge at all.  Anyone could walk into any room there pretty much unchallenged.  But at Bradley, that would not happen.

The social worker assigned to us came to get us, and we went into a meeting room.  There we talked for a long time to quite a few people---the psychiatrist that has been assigned to Janey, a speech therapist, an occupational therapist, someone I think was a behavior therapist and a few more people whose roles I am not sure about right now!  They asked us many, many good questions about Janey, things like what upsets her, what calms her, what her speech is like, how her behavior has recently changed, what medications she takes, how she is at school, how her sleep and eating area---all that.  Everyone was very understanding and respectful.  The process felt unrushed, unlike anything at all at the regular hospital.

After the long talk, we went to the ward to see Janey.  We had to put our things into a locker---my pocketbook, Tony's jacket, a clipboard---you can't take much of anything in with you.  I did bring in a big bag of clothes for Janey.  Once in the ward, we had to sign in again.  And then we saw Janey!  She looked very cheerful.  There was a relaxed smile on her face we hadn't seen for several weeks.  It was wonderful to see.

The rules of visiting are that we have to visit with Janey in her room, not in the common area.  Therefore, we stayed just a minute, because I couldn't bear to have Janey shut in a room again.  She was happy being active, and it was the middle of their day there.  She was about to have arts and crafts with other kids.  So we put away her clothes, gave her a few big hugs and said goodbye.

The hospital is very strict about talking to other children.  We saw a few boys who are on the ward with Janey, but the rules are that you can greet them if they greet you, but can't talk to them otherwise.  I can see the reasons for this, although I would love to get to know other children like Janey a bit more.

We got the feeling that Janey is already winning over the staff.  They had a few cute stories to tell about her already, including how they did the "Turkey Pokey", like the "Hokey Pokey", and that Janey loved that and did an impromptu solo dance and song after it was over.  I can see Janey being very happy there.  They will keep her busy and give her attention.  I think the question will be more---will this carry over?  Will we get help and ideas and medication changes and so on that will help us once she is home?  I am going to try hard for right now not to think about that, to just be glad she is in such a great place and to try to relax at home.  This is the respite we had wanted.   Not in the way we ever wanted to get it, but I still need to use this time to regroup mentally---between drives to Rhode Island.  I am certainly going to sleep well tonight, and I hope Janey does too, a whole state away from me.

The long day's journey into hope

As I write this, I am at home.  Janey is in Rhode Island, at Bradley Hospital, a children's psychiatric hospital.  I am going to try to write about the last few days---days that seem like a long, long dream---not always a bad dream---more like the confused, meandering type dream with many elements that seem to not make sense, but a general feeling at the end of hopefulness.

Wednesday morning---Janey woke groggily after a fairly solid night of sleep.  She woke a few times, still obviously under the influence of the anesthesia and the extra medication she had been getting.  She kept falling back asleep after just being up a few minutes.  Her blood pressure was often low when it was checked, and she wasn't very steady on her feet.  Tony came by before work, and I snuck out for my daily cup of Au Bon Pain coffee---a lifesaver.  After he went to work, my amazing friend Maryellen came to help.  It was fantastic having her there on both Monday and Wednesday.  If you ever have the misfortune to be a "boarder" in a hospital, waiting for a psych placement, I hope you have a friend like Maryellen.

That day, Wednesday, is a bit of a haze in my mind, as it was I think in Janey's mind.  I know I was visited by several people.  One was the psychiatrist on Janey's case, who I will not talk about a great deal here.  I will just summerize by saying she saw Janey for about 10 minutes on Monday night, when I was home and Tony was with her, and from those 10 minutes was able to feel that she was "delightful" and "prone to moodiness".  Okay.  Both are very, very true, but not exactly the impression that others had gotten of her, especially those who were bitten or attacked by her.  Enough said.  Regardless of that opinion, she was continuing the search for a inpatient hospital for Janey.  At that point, the most likely candidate was Hempstead Hospital in New Hampshire.  They had her on their waiting list, and were just waiting to see if a patient was discharged on Thursday.

A few other people came by.  One visit was the speech therapist and the child life therapist (I think).  They wanted to make a schedule for Janey, using picture cards.  Janey was out cold when they visited----I tried to rouse her, as she had been sleeping too much, but couldn't.  They said they would come back later in the day.  The most striking visit was from the hospital chaplain.  She said she knew I had been there a while and wanted to know if I wanted to talk.  Yes, indeed, I did.  I am not a very religious person, but there are no atheists in foxholes.  Maryellen stayed with Janey and we went to a private room to talk.  It was wonderful.  She was a rabbi, but our talk was not really about religion---more about helping me think about how to go forward.  I have rarely had a better talk with anyone.

Later in the day, Janey woke a bit more.  The speech therapist came back, with a PECS type board (little cards with velcro on the back and pictures of various activities on the front, to make up a schedule)  She was very well meaning, and such a schedule might be great in another situation, but the fact was that we were confined to one room, and there simply weren't a lot of choices of activity.  Janey has also never been a huge fan of PECS, which her schools have figured out.  It struck me that the time spent making up the fairly elaborate board could have been used one on one with Janey, giving her some help and us a bit of a break.

Wednesday night, Janey again slept fairly well.  I was feeling that she was a bit overmedicated.  She had been getting extra Risperadol several times when she lashed out, to help calm her, and she was starting to seem very hard to really wake up.  I decided if possible, I would avoid further extra doses.

As Janey woke Thursday morning, she was not in a happy mood.  She started what she had been doing often during the stay---moaning out "Mama!  Daddy!" and crying.  She at one point jumped out of bed and ran toward the current "sitter", a very nice woman, and scratched her.  I managed to calm her down, and soon Tony arrived.  He had worked on Wednesday, but we decided he would stay home on Thursday and Friday.  We settled in to wait for news on the hospital transfer, which we were told we'd get around 10:30.

At about 11, the social worker came in to fill us in.  She walked in ready to tell us there was no new news, but as she arrived, she got a text telling her that there was a place for Janey.  The place was not at Hemstead Hospital, as we had been anticipating, but at Bradley Hospital, in Rhode Island.  We were thrilled there was a place anywhere, thrilled in a way you can probably only be after spending 6 days in the hospital with a very agitated autistic 10 year old who can't leave their room.

I am going to write the rest of the story up to this morning in just a little bit---I thought I would divide this part up as this is getting long.  I am going to interspace a few pictures of Janey at the hospital.

I again thank everyone who is following this journey.  Your comments, thoughts, prayers and ideas mean more to me than I can ever, every express.

"But there are so many programs out there!"

So often lately, I hear about a new great program for kids with autism.  Sometimes, I hear about it in the news, or someone tells me about it, or I dig it up with some research.  Often, I get very excited about the idea of the program, until I look at the fine print or try to apply, and then find that Janey isn't eligible.  This is not something that just affects Janey.  Autism covers a HUGE range of behaviors and abilities.  Saying that a program is for children on the autistic spectrum pretty much says nothing.  It's the fine print that figures out WHICH children the program is for.  But the general public would certainly be excused in thinking that any parent of an autistic child could pick and choose from tons of exciting opportunities.  

I want to emphasize I know how lucky I am to be living in the time and place I am.  There ARE opportunities for Janey.  She goes to a school program designed especially for children like her.  She gets speech therapy, occupational therapy, swimming lessons, music therapy and more---all at school.  She has a terrific teacher.  Last summer, she went to a camp that I can never, ever say enough about---Camp Fatima---a dream camp.  I am grateful for all the help Janey gets.  And many of the other programs we aren't eligible for, I might not want for Janey anyway.  But I just wanted to illustrate that just because you hear of a program for children with autism, it doesn't mean that ALL children with autism can participate.  Here's two examples---

The Boston Conservatory has a program that gives lessons in music instruments or voice to children on the autistic spectrum.  The program sounds incredible---read about it here--and I eagerly went to their FAQ page to see if Janey would be able to access it.  Well, this line stopped me cold "Yes, students must already possess basic proficiency (i.e. can play without hand over hand instruction) in their instrument" ,written as an answer to whether the children had to have prior experience.  So, basically, this wonderful program is available only to kids on the autistic spectrum who have already had lessons---kids high functioning enough to have been able to be taught the basics of their chosen music area already.  And they must have been able to do on in regular classes, as the page says this new program is the only of its kind in the country.  It also costs $1000, which isn't so much the issue---not that we have a thousand dollars lying around to spare, but if the program was open to Janey, I would brave hell or high water to find that money somehow.  But---it isn't.

And here's one where Janey was too HIGH functioning.  I heard about a study being conducted here in Boston to help children with autism acquire language, using new techniques (read about it here).  I registered to be considered for the program, and got a call yesterday from a very nice woman who told me all about the program, which sounded wonderful---very intensive and innovative.  I kind of had a suspicion here that Janey would not qualify, though.  The program is for children called "minimally verbal"  I would consider Janey to be minimally verbal, in that she doesn't talk except for simple requests or echolalia, with very rare exceptions, but I do know that that is much more verbal than many kids with autism (and I know how lucky I am that Janey does talk that much)  And indeed, once we were screened, the researcher told me that Janey has too much speech to be included in the study.  I respect that.  It's a scientific study, and she doesn't meet the guidelines.  But I still felt disappointed.  Seven years of speech therapy have not significantly improved Janey's speech, and I would love to have a chance to try something new to help expand her talking.

I could give a lot more examples here, but these two illustrate what I mean pretty well.  I know there are programs which Janey would be right for and other autistic children would not.  But for someone without knowledge of the nuances of autism, it might seem that there are far more opportunities out there than there really are.  That's why it's so crucial that organizations that support autism put their funds into DIRECT SERVICES---not some vague "awareness" campaign or research that might possible help some theoretical child 10 years in the future.  We need help NOW.

Puzzling Out Janey's Limited Speech

Of all the mysteries Janey presents, the most frustrating one to me is her speech.  Why is it that she doesn't talk more, and that her talking basically never advances?  Or, perhaps the more correct question---why is it that she talks at all, while other girls with autism I've heard of that seem more advanced in most ways than her DON'T talk?  Either way, why is it so hard for her to communicate?

Last night, I spent some time while not being able to sleep thinking about the possible reasons for Janey's limited speech, and eliminating them one by one in my mind, trying to get to the core of it.  Here are the reasons I ruled out, and why...

Inability to produce words verbally

That one is easy to rule out, because Janey can say anything verbally.  I know this because she DOES talk constantly, using delayed echolalia.  Janey can recite the full script of movies and TV shows she's seen years ago.  She can say several Three Stooges skits line for line.  She remembers lots of poems she's heard at school, to say nothing of the thousands of songs she can sing.  She has no problem producing speech sounds, with the exception of "th", which she has a bit of trouble with, but she says it anyway, cutely.

Lack of vocabulary

It would certainly be possible that Janey could have a lack of vocabulary, because the words she says via echolalia could be meaningless to her---just recited words.  But that doesn't seem to be the case.  The most vivid way this is shown is when she's in a very rare cooperative mood and she will allow herself to be quizzed on single words, with iPad programs that show pictures so she can name the words.  She knows amazing amounts of words---mostly nouns, but some verbs and adjectives.  She can name obscure things like "pelican", "castle", "earmuffs", "peacock" and more.  We have watched her do this in amazement several times.  She KNOWS the words.

Lack of understanding of spoken language

This would be more of a contender until recently.  But Janey has shown more and more how good her receptive language is.  The best way she shows this is by following complicated instructions.  She often will come to me with something she wants to eat, like a jar of salsa (which she eats on its own).  I will say something as complex as "You can have that after you close the refrigerator and get me a bowl and spoon, and take off your top so we can put on an old one that can get dirty", and she will do all I say to get the salsa.  I can ask her to get ready for school, and she'll find her shoes and backpack and walk to the door to head out to the bus.  She knows what we are saying.

Lack of desire to communicate

I don't think this is it.  Janey asks us for things all day long, and often she is frustrated that we don't get what she means.  For example, her most used phrase for about a year now is "Snuggle on the bed"  However, this can mean about 10 things, including "I want to snuggle with you", "I want you to get up from the bed (or couch) where you are so I can be there instead of you", "I am tired and want my pajamas on so I can go to bed" or "Stop doing whatever you are doing and pay attention to me", among others.  She very much wants us to know what she is trying to say, but she doesn't seem able to narrow it down, even with us modeling a phrase once we do figure out what she means that particular time.

So----Why?  Why is Janey's speech about the same as it was at age three, when she first regressed, and worse than it was at age 2, before she did?  Why, despite years of speech therapy three times a week, has she made no progress that lasts?  I don't know.

Many people have suggested augmented communication for Janey, like a speech program on the iPad.  I downloaded the trial version of several such programs a few months ago, and have been trying hard to get Janey interested.  She isn't, not one tiny bit.  In fact, she now gets angry when she sees me showing them to her or even using them around her.  She immediately grabs the iPad and switches to something else.  Maybe I don't know how to teach them correctly, but she seems extremely bothered by the computer voice, although I've tried changing it.  Janey is HUGELY sensitive to noise and sounds.  She is an auditory learner, unlike many kids with autism who are visual learners.  I think this makes AC doubly tough for her.  She isn't interested in visual symbols, and she doesn't like to hear voices that don't sound like she thinks they should, just like she is driven crazy by off-tune music.  So it seems like we are stuck with trying to get her to talk to conventional way.

I wish very much I could figure out how to help Janey with talking.  However, I am starting to feel it's not going to happen.  I'm not a speech therapist, but the very good speech therapists she's seen don't seem to have a handle on how to help her either.  Maybe I need to just be grateful to be able to have her talk at all, and the truth is, I am, very much so.  I know it's not a given, and I'm very lucky she does talk, even in a limited way, and that she does understand.  I'd stop striving for more if she were happier.  But when she screams and screams, I can't help but feel that she would be happier if she could tell us more easily what she is thinking.  And so I will keep trying to figure it out.

The Big IEP Meeting

I should write about today's IEP meeting while it's fresh in my mind, as it was an important meeting, one that will affect the course of Janey's life and ours for years to come.

There really weren't any big surprises at the meeting.  First we heard from everyone who works with Janey about how she is doing---the regular ed. teacher in her room, the special ed. teacher also in her room, the speech, OT, PT and music therapists, and the ABA instructor and her supervisor.  It's always amazing to me to see what a big and caring and wonderful team Janey has---all thoughtfully relating Janey's progress and non-progress.  Basically, she is making progress, and doing things that she couldn't do in the past---matching objects, sorting objects, taking turns at times, using PECS communication more and more and writing her name with ease (which she will never do at home!)  However, everyone agreed that her moods and her difficult behaviors very much impede her progress.  She often will do something one day, but then refuse to do it again.  On bad days, when she is biting herself and lashing out at others and screaming, it's very hard for her to learn at all.

So, at about the middle of the meeting, there was a big pause, as everyone in the room I think knew what was then going to be said---that Janey needs a new type of classroom.  She needs to be in what is called a substantially separate classroom, and because her current school is an inclusion school, she needs to move.  She will move to a school with a large autism program, a program that has existed for a long time---at least 18 years that I know of, which is an eternity in the world of autism.  It's the school I visited, and I was determined at that time not to want Janey to be in.  I've come around since then, and I do feel it's the right decision to move Janey.  We owe it to her to give her a shot at learning more, and being in an environment made for children with autism.  I was impressed with the ratio of children to adults there, with the kindness and patience of the teachers and therapists and aides, with the progress the kids appeared to be making.  I am hopeful Janey will do well at the school, and once the IEP is signed, we will start transitioning her there.

All that being said, there was a lot of crying at the meeting---not just mine.  The principal sat in on part of the meeting, and tears were in her eyes a lot of the time, as well as in almost everyone else's.  As the principal said, the Henderson School is Janey's home.  It has been for years and years.  She first set foot there when she was 2 weeks old (or earlier, if you count my pregnancy).  I have had a child there for 14 years now.  I love the school.  I truly, truly love it.  But what I love, and what I am comfortable with, is not what is most important.  Janey's needs are.

We will stay in touch with the Henderson.  Janey may still go to after-school there.  We will take her to the spring dance.  We will visit.  And some day, we will bring her back.  The Henderson now is going to be a K-12 school, and at some point, when Janey is ready, it will be her school again.  That is my hope, anyway, and the hope of the staff there.

So, for now, I am going to just try to enjoy these next weeks.  I'm trying hard to stay positive, because I know there is a lot to be positive about.  It's a positive thing to have a whole room full of people working to help Janey, to have a school full of people that love her, and a new school to go to that I do hope will love her too.  We are all hopeful that Janey will be able to progress well at her new school.  But, I do admit, the tears keep sneaking out here and there.  I guess any big change feels scary, and one involving a child like Janey, doubly so.  But we are not going through this alone---we are very lucky to have many others helping us, and I thank all of them for their past, current and future love of my precious girl.

Gold in the Ocean

I've read there's lots of gold in seawater. It's there, but it would be very, very hard to separate it from the water.  Do we look at the sparkling ocean and think "Wow, it's so beautiful because of the valuable gold it contains?"  I don't think most people do.  They love the ocean for other reasons.  Lately, I've been thinking about this a lot as a metaphor for Janey's brain.  I think there are amazing things inside her brain.  I think she has ideas, music, opinions, sassy backtalk, arguments, words of love and all the other parts of a child's personality that they share with us when they talk.  But getting all that out?  Sometimes it's like getting gold out of ocean water.  To carry the metaphor further, I don't want Janey to be valued for what might be in her mind.  I want her to be valued for what she is right now.

But what if we could figure out a good method to get the gold out of the water, effectively and safely?  That would be great.  I'd go for it.  But say I tried and it didn't work.  Would I think devalue the seawater?  Would I think less of its beauty, and value, and usefulness?  I hope not.

I would dearly love Janey to be able to better communicate.  I dream of it.  I long for it.  But over the years, she has made very little progress in this way.   This was brought home to me today as  I prepared for an appointment we had this morning to start the process of Janey being followed by the autism team at a big hospital.  I was looking over reports and IEPs and notes from years back, and I was struck hard by how I think Janey talked more at 4, a year after her big regression, than she does now.  Her talking ebbs and flows, but it can in no way be seen as a graph going up.  She isn't talking more as she gets older.  I don't think if she ever will.  This is despite lots of speech therapy, great teaching, Tony and my and the boys efforts, ABA, an iPad, everything we can think of.  There's a good chance we will never, ever hear the great things I believe are in her mind.  They may stay locked in there forever, at times letting us have a little glimpse of the treasure, but for the most part, inaccessible.

I want the world to value Janey just as she is.  But the biggest battle I have is with myself.  I need to truly accept Janey as she is.  I'd like to think I do that, but sometimes, I go beyond just hope to pushing, to probably letting Janey know that I wish she would talk more.  For example, last night Freddy was quizzing me on things he'd learned in school.  For fun, he quizzed Janey too, asking her to tell him a number.  We didn't expect an answer, but she piped up "Like, four?"  I was thrilled, and praised her highly.  I then started asking her lots more things, I guess trying to strike while the iron was hot---asking her to tell me a letter, to point to her brother, to tell me a shape, to spell her name, to give me the names of the cats----none of which she answered.  And as I watched her face, it turned from happy to confused to blank.  She tuned out.  I am sure I showed that I was thrilled by that glimpse of the gold in the seawater.  Do I act as excited when she claps along to her favorite bluegrass music?  Do I praise her for dancing around, for smiling, for just being herself?  I need to.  I need to show her that she is valuable not just for her potential, for what she might be have locked away and lost the key for, but also for who she is, right now.

It's not a race

If you have spent much time around little kids around age 4 or 5, you are probably familiar with the stage they go through where everything is a race.  You give a couple of them a glass of milk, and you are sure to hear someone say "I won!  I drank it quicker!"  And you are sure to hear yourself saying that classic line "It's not a race!"

That line was in my mind a lot after our meeting with the developmental pediatrician.  The more I think about the things she said, the less I agree with her.  She first tells me how poorly Janey did on the intelligence tests, which was not the problem.  I expected that.  But then her advice, which is all centered around school---more specifically, feeling that Janey is not making the maximum possible "progress" in her current "placement".  Janey is not learning as quickly or as much as she possibly could.  She grudgingly heard what I said---that I was extremely happy with Janey's school, that I would not consider moving her, that I loved the people who worked with Janey---and then went back to saying basically that she was not getting "all she needed"  Janey should have a one-on-one aide, she felt.  She should be in a separate classroom.  She should be being taught intensely.

And I have been thinking ever since then---WHY?  It's not a race.  We know Janey doesn't learn in a typical way.  She doesn't learn in steady lines.  She learns in an unusual way, and she learns slowly.  Janey is not going to college.  She is not going to get a high school diploma.  She is not going to hold a job.  I am fairly at peace with those facts.  And so why in the world would be it even something I'd consider to move her from a school where she is loved, cared for, taught by people who understand her and are interested in her, where she is surrounded by kids who are kind and compassionate and have grown up with Janey, where people know not just Janey but our whole family?  Why?  So she could show a little steeper rise on some chart of progress?

Janey's IEP meeting was a few days ago, and I left it feeling as I usually do after such meetings---extremely happy.  Teary-eyed at being in a room full of people who love Janey, who get her, who are fascinated by her, who see her clearly---not as a statistic, but as a little girl---an unusual little girl, a little girl with behaviors that can sometimes be very tough to deal with but other times can be incredibly touching.  And people who are giving Janey exactly what she needs---not just in terms of love but also in terms of therapy---speech, OT, PT, music therapy and ABA (which they increased, without me asking).  

I've started a book called "Far From The Tree" by Andrew Solomon.  It's a huge book, and I think I'll be writing about it a lot more.  It's about the relationship between parents and children when the children are very different than the parents, by means of having a disability or other difference.  I love it so far.  One early fact related struck me as relevant to my recent thoughts.  It spoke of how fewer than one in ten professionals (which I am taking to mean psychiatrists, pediatricians, etc, and not teachers or therapists, although they are certainly professional also) found meaning in the struggle to raise children with special needs.  Most of them see it as a tragedy---see the lives as a tragedy.  If that is the case, I can see why they would think that even small improvements in the "outcome" would be worth making drastic changes in the child's life.  I'm sure this is not always the case, but I can see that it sometimes is.  

One gift that having Janey gives us is the gift of time, of not having to rush.  With the boys, there are grades to be completed, tests to take for college, deadlines, must learn now subjects.  With Janey, there is her whole life ahead to learn.  She doesn't need to hurry.  She isn't going anyplace soon.  She will be here, with Tony and me, for a long time.  She can take her time.  She can enjoy her life.  It's not a race.

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.