As Janey nears adulthood

 I've had a very hard time getting myself to write a blog entry lately.  I think this is because next month, Janey will be 18.  She will be an adult.  It's hard to believe, as is the case with any child turning into an adult.  But in Janey's case, it's more bittersweet than it is with most children.  

I keep feeling like I need to somehow sum up Janey's childhood, to tie it up in writing.  And of course I can't.  And of course also, her 18th birthday is just a number.  To her, it won't make a difference.  She doesn't understand what it means, in any way.  To us, it's going to change things mostly just in that we need to get legal guardianship of her.  It won't change our daily life at all. But still---it feels like a milestone, or in some ways, like a deadline that has run out.

I guess there are two ways we can view Janey's childhood.  

One way, the more positive way, is that it's been a journey to acceptance, to understanding.  I can say a few things completely honestly.  Janey's intellectual disability, which is very significant, seems completely unimportant to me in terms of how I see her.  I don't think it means a lot in terms of who she is, her core personality, her Janey-ness.  I can also say that she is a joy to us, that Tony and I can't picture what our life would be without her, that we love her as much as it's possible to love someone.

I noticed as writing that last paragraph that it wasn't really about Janey.  It's about our feelings toward her.  And that is mostly because I truly have no idea how Janey feels about her life.  But I hope she would also say that as the years of her childhood went by, things got better.  We came to understand what she liked and what she didn't, we got her into schools that increasingly valued her and made her days interesting, we learned what we could ask her to do and what she wasn't going to be able to do.  I hope she is content with her life at this point.

The other way to view her childhood is, well, in some ways a tragedy, a failure.  I don't say that because it's how I feel about it, but looking at it from the outside, I am sure that some might.  She went from a two year old who talked a lot, and who despite not walking until very late, seems destined to be a typical child, to a near 18 year old who has never, ever recovered speech after her huge regression to anywhere close to her two year old level.  Academics have never really kicked in for her.  She might know a few letters and numbers here and there, but she can't write, can't read, can't do any math.  She speaks in familiar phrases, with very few exceptions.  She isn't toilet trained completely, she struggles to dress herself, she will never be able to live alone or hold a job.  She is not one of the autism-overcoming success stories that inspiring books or articles tell of.

But maybe there's a third way of looking at it.  I thought of this when seeing Facebook posts about girls she, long ago, was in preschool with. They were graduating from high school, going to proms, being valedictorians, getting accepted to college.  I might have thought, once, that this would be hard for me to see, but, in total honesty, it wasn't.  I was happy for those girls, very happy.  I didn't think about how Janey wasn't doing those things.  What kept coming into my head was "They are living their path.  Janey is living hers"

None of us live with any guarantees or certainties about how our lives will turn out.  No-one can say, when holding their precious newborn for the first time, what path that child's life will take.  What if we radically accepted that, if we were able to just celebrate what our child does do, what she brings to the world?  I'm saying this while fully admitting I can't do that totally.  Part of the reason, much of the reason, is that I don't know if Janey wants her life to be the way it is.  I just don't know that.  I will write more about my thoughts on that in another blog entries, hopefully soon.  But I will say it's not really up to me, it's not something I should say, to decide if Janey's life is a triumph or a tragedy or somewhere in-between.  And I think a source of much of my sadness when thinking about her life is that she herself can't tell me that answer.

So---I can't sum up Janey's childhood.  But I'll say this.  It's been quite a ride.  And I know it will continue to be so.  And I will continue to write about it, maybe more than I have lately, because autism doesn't end with the end of childhood.  Janey, we will be with you as long as we draw breath, and we very much hope we can give you the adulthood you deserve.

The Things Janey Cannot Change---a plea for serenity

 Last night, while Janey was lingering in the shower after I washed her hair, she said "Want to get out?" I knew what this meant, and it wasn't that she wanted to get out.  She wanted me to adjust the water, to make it hotter or colder.  

I started to reflect then, and kept reflecting all night and into today, on how little influence time and examples and corrections seem to have on Janey.  For years and years and years now, whenever she has said "Want to get out?" while in the shower, I've tried to get her to say what she really means. I've said "Do you really want to get out, or do you want me to fix the water?"  I've tried taking her at her word, and reaching in to help her get out.  I've tried getting her to repeat "I want you to fix the water" before I will do it.  I've tried everything I can think of.  And still, Janey asks to get out when that's not what she means.

I can think of so many other examples like this.  One that keeps coming to mind started at age four, when she first starting with ABA.  The therapist had a Slinky Janey liked, and Janey would ask for it saying "Yoyo?"  I think she started calling it that because she liked to have it bounce up and down, like a yoyo.  The therapist seemed to feel it was important to have Janey ask for it correctly, and would never give it to her unless she said Slinky.  And Janey never would say "slinky" unless she was prompted to, no matter how much she liked the Slinky.  Last month, I showed Janey a slinky from some box of sensory toys I'd gotten.  Janey grabbed it, saying, of course, "Yoyo!"  I don't remember Janey playing with a Slinky in all the 13 years since she was four, and if she did, I'm sure no-one called it a yoyo.  But that's her name for it, and it didn't change.

When Janey wants us to put a show on for her, and we ask which one she wants, she says "This one!"  Although we are driven crazy by this, and we are super motivated to get her to be more specific, although we have tried every single idea we could possibly think up to get her to stop the whole "This one!" bit, it doesn't work.  She still says it, every time.

The same unchanging Janey shows up in ways besides talking.  She is drawn to beds when she has a full bladder, with predictable results.  Believe me, she knows that's not a behavior we like.  Believe me, we have tried extremely hard to stop her from that behavior.  But it continues, year after year after year.  Janey likes to rock in the car to music.  Doing this rubs her neck against the seat belt, and cuts into her neck at times.  I'm sure this hurts, but even that doesn't change her rocking.  Janey stuffs her mouth full of foods she likes, especially salami.  We have tried so hard to stop this---giving her only little pieces at a time, staying near her and constantly reminding her to chew and swallow before taking more, cutting off her salami supply---all to no avail.  

It's hard to understand why Janey persists with behaviors and speech and routines that just don't work well, or actively can hurt her, or that provoke non-positive reactions.  I have to assume it's very, very, very hard for her to change a behavior or label or phrase once it's established.  This worries me.  We are used to her.  We get frustrated, but we love her and accept her, even sometimes through gritted teeth.  But the wider world?  The world without us with her?  I can see how she could seem willful, stubborn, provoking.  I can see how it would be hard for others to understand the depth of her mental barriers to change.

By this point, we've accepted that Janey simply can't change in some ways.  It's not like she doesn't learn when she can.  Anyone who has seen her hands flying using her iPhone or navigating or a web browser, or singing obscure verses of Christmas carols knows she can learn some things extremely well.  And I'm sure she would want to be able to effectively communicate with us; I'm sure she doesn't like hurting her neck or choking on too much food; I'm sure she's tired of our angry reactions to wet beds.  And I know we are motivated to do whatever we can possibly do to try to help her learn the stuck-in-wrong words or behaviors.  We, and she, just can't do it.

What is my message here?  I guess it's to plead for the world's understanding for Janey and all the others like Janey.  They are doing their best.  Those of us working with them are doing their bests.  But as the Serenity Prayers says, even to a non-religious heart like mine, let's all work on serenity to accept the things we can't change.

Here's a picture taken today of my bewildering, beloved Janey.

Impossible things happen every day

 As I write this, it's nearly 11 pm, and Janey is wide awake.  Not an uncommon thing, to be sure, and I'm pretty sure she's not going to sleep at all tonight.  We've learned to tell, over the years, if it's going to be a sleeping night or not.  

What I've been thinking about a lot over this past month is how Janey's kind of sleep issues just are not much addressed in any kind of sleep advice I've ever read.  And I think that's because sleep experts, or parenting experts, or autism experts, unless they have a child themselves with Janey's kind of sleep problems, just don't believe us as parents.  

And it's not just sleep, I've realized over the years.  I don't think the experts believe how much the wrong food can affect Janey.  I don't think they believe that she can know so many words but be able to express herself verbally in such a limited way.  I don't think they believe that it is impossible to fully toilet train her.  I don't think they believe she can show physical illness in the ways she can.  I don't think they believe the extremes.  

Or if they do, they don't know what to do with the kind of extremes we as parents deal with.  It's easier to just discount what we are telling them and dealing with than to accept there might be areas they aren't up to helping with.

With the sleep---Janey can and has literally gone 3 nights with a total of 4 hours of sleep.  Not per night---TOTAL over the three days and three nights.  And she can still function---in fact, can still be jumping up and down and giddy on day three.  This happened over Christmas break, and it's happened before.  Before the break, we saw the other extreme---a two week period where Janey slept pretty much all day and night.  She came home from school and went to sleep, she woke up enough to sleepily go to school, she slept off and on there, she came home from school, ate a lot, and went to sleep again.  We tried near the end of these 2 weeks to talk to her pediatrician, to see her, but before that was possible (with the COVID surge, sleep issues are a low priority), the spell was over.  It was like she decided to catch up on all the lost sleep of many months, and once she did, she went back to little sleep.

With words and speech---I don't think any speech expert has ever really gotten what I've tried to explain about Janey.  She has the words, in her head.  But she can't access them easily.  One of the only ways I know she DOES have the words is the rare time I've caught her in exactly the right mood to do flash cards.  I ask her if she wants to, and if she does, she will name things that amaze me.  Recently, she identified a swan, broccoli, a lime, a skyscraper, a slug, a person crocheting---all within about a minute, all words I've never once heard her say before.  But the advice I've gotten or read to encourage speech never addresses how to help her retrieve the words she knows.

And toilet training---that's enough to set me off on a rant.  How is it that Janey has at several points been fully trained, only to lose the skill?  How is it that most of the time, she is trained at school but not at home?  Why does she often need what I'll call a severe change in the night, when she's been asleep?  You can write a hundred expert books of advice about motivation, about routine---those aren't the issues here.  Believe me, if expert advice worked for Janey in that area, we'd have been done with this particular problem many years ago.

The example of Janey not lining up with what is said to be possible that most haunts me---Janey motionless in bed in the hospital.  A doctor shaking the bed.  Janey doesn't move or make a sound, and the doctor says, almost with a chuckle, "well, she certainly doesn't have peritonitis!"  But she did, as a result of an appendix that at that point had been ruptured for two days, and would be ruptured another day before finally, she had life saving emergency surgery.  But someone with peritonitis CAN'T keep from screaming and moving when their bed is shaken.  They just CAN'T---unless they do, as Janey did.

My fellow autism parents are reading this with their own lists in mind of the "impossible" things their beloved kids do or don't do, I'm sure.  I'm preaching to the choir.  But why is it so very hard to get believed?  Is it because it's easier to give advice based on what you think is true, not what some crazed parents is telling you is true?

This is why I try very hard to not discount what others might think, in all areas of life, to be impossible, insane, foolish.  I know what it's like to be awake night after night caring for a child that can't possibly not be sleeping, to be astonished by the words my minimally verbal child is saying with ease, to have a critically ill child not being treated promptly because she is reacting in an impossible way.  Listen to parents, especially when they are speaking for children that are impossibly complex.  I love you, my incredible Janey.

Finding words when you need them

 I missed a day of my aimed for week of new blog posts, but that's life in our household!  The best laid plans of mice and men...

I think constantly about Janey's speech and its oddities.  I was thinking for a long time that the main issue she has is with word retrieval.  The words are up there, in her head, but she just can't find them when she needs them.  Lately I've refined that in my mind.  She can retrieve them under certain circumstances, but not in conversations, or in casual remarks or questions.

Janey in a top featuring one of her favorite Christmas songs.

For example, as I've written about before, Janey can show a remarkable vocabulary under very specific conditions.  The best way to have her show it is, when she's in a good mood, to show her flash cards or point to pictures in a book.  If we do this rapidly, without saying anything but "What's this?", she can name pretty much anything you could imagine.  She'll name things we have no clue she'd know, like "iguana" or "moat" or "treasure chest"  I think this might be a bit like Rapid Prompting.  The key seems to be that you aren't asking ABOUT the words, and you aren't putting any other demands on her at the same time as asking her to name the words---not any social demands or extraneous comments or anything.  

Sometimes it also works to ask her a series of questions, as long as they aren't about what she wants to do or how she feels, but more just information questions.  For example, one night she wanted to go for a car ride, and I told her we couldn't because Tony was busy.  I said "What is Daddy watching?" and she answered quickly "The Patriots!" and I said "What do the Patriots play?" and quick as a flash she said "Football!"  I was very surprised at both answers.  I had no idea she knew the name of the team or what they played.  But it was up there in her brain.

Another clue to how Janey's speech is organized in her brain is the kind of mistakes she makes.  One morning, I was helping her put on some Santa socks.  I asked her who the socks showed.  She answered, after a little pause, "Christmas!"  I think there's categories she stores, and when she can't get the right word out the category, she gives the category name.  This might be a part of her most common response, when she wants help putting on a TV show, and we ask her "What show do you want?" and she says "This one!"  We are asking her for the specific show, and she is answering with a category, the category of all TV shows, because coming up with the name of the certain show is not something she can do right then.

Janey doesn't talk conversationally, without extreme prompting, not ever.  Her speech just doesn't seem to work that way.  She never says to us "How are you?" or "What are you doing?" or "Where are we going?"  She never responds spontaneously to questions like "How are you?"  She might say "I am fine!" if that's something she's been taught, but she'll never, ever just answer with a casual, on the spot answer.  That is why I think she just doesn't have access to her vocabulary in that context.  The words might as well not be stored at all, for how much she can use them in conversation.

I wish there was more written about how what's sometimes called "low-verbal" kids with autism talk.  It's pretty fascinating to me.  I've read a lot of science for laymen type books about how people learn to talk in general, such as "The Language Instinct" by Stephen Pinker, and I think a study of someone with a language disorder such as Janey has could help understand how words are stored in the brain. 

One very interesting fact I've read a lot about is how sometimes people lose the ability to talk but keep the ability to sing.  Janey's access to songs in her head is far better than her access to words.  She will often start singing spontaneously, in a way she never does with talking, and this doesn't seem scripted.  It just seems like a desire to sing a song, which we all have sometimes.

I would love to know how to better help Janey use the words she knows.  Janey's had lots of speech therapy, but I don't think it's ever addressed her specific issues with retrieving words for conversational speech, and maybe there is no way to teach that.  It's tough, because you can try to help her answer things, but in doing so, you almost always have to give an example, and that example becomes a script, and usually gets turned around in terms of pronouns.  You can say "How are you feeling?" and wait for answer, but when you don't get one, how do you show her how to answer?  If you say "I feel fine!", she doesn't seem to pick up on that as an example of how she can talk. So we'll say "Can you say 'I feel fine'"?  And she'll say the whole thing back "Can you say I feel fine?"  Or if we ask "Do you want to go for a car ride?", she comes to see that as a way to ask for a car ride, and we get the whole phrase "Do you want to go for a car ride?" to ask for a car ride.

Many days pass with Janey only saying three or four different things.  Her mainstays are "I need help!", "Want to go for a car ride?", "Want salami?" (sometimes substituting other foods there) and "Cuddle on Mama's bed?" (which means she wants us to cuddle on her bed---at some point wanting Mama to cuddle her got mixed in with the bed part and turned it into that combination)  That, along with "yes" and "no" and the always versatile scream are the core of her talking.

I'd love to hear from other parents of minimally verbal girls, and from those who communicate non-verbally as well as those who talk more freely.  Communication in autism is fascinating (and frustrating)

Every day for a week

 I've been neglecting this blog lately.  Most of that is the whole pandemic related every day feeling the same bit.  It feels like nothing changes, like we are all just in a big holding pattern.  But thinking about it yesterday, I realized actually lots has been happening.  Being with Janey 24/7, we are every day learning more things about her and figuring out more ways to engage her, and understanding more how her mind works.  I've had a lot of thoughts I'd like to share, but I kept feeling like I had to wait to write until I tied them all together and had some perfectly worded way to sum them up.  When thinking about this last night, I realized I just need to write, to get back in the habit.  So bear with me as I start my week of blogs---a little each day!

I'll start with---how are we doing?  Okay.  We're doing, well, okay.  Like everyone else, we are tired of this whole bit, but hopeful that maybe a light at the end of the tunnel is starting to be visible. Janey hasn't been in school in person since March, not a day.  At one point she was offered a hybrid model, which would have resulted in the end in her having about 4 days total in school before it shut down again.  I sensed that the renewed shutdown was coming, and I just didn't think it was worth the risk to send her.  I'm glad I didn't.  Now only a very, very few kids in Boston are going to school, and Janey is not one of them.

Remote learning---well, that' s not easy with Janey.   Her teachers and therapists have been trying hard.  Janey now pretty much tolerates the morning meeting, which lasts about 10 minutes, starting at 8 o'clock.  She will sometimes watch recorded lessons, with varying amounts of interest.  I can get her now and then to do a little bit of work on paper, circling things or listening to short stories.  But it all adds up to vastly, vastly less school than actual school, probably about 1/100th as much.  And no real social contact, no special things like swimming or dance, no time away from her family.  When I think about her being 16, and how limited her life is----well, it's not great.

And from the perspective of Tony and me---that's tough too.  We have absolutely no time at all without fully caring for Janey.  School always gave us a bit of time to breath, to nap if necessary, to regroup.  Caring for Janey is a lot like caring for a toddler in an adult's body, day and night and day and night.  We are tired.  Janey's sleep hasn't been great, to say the least.  About once a week, she doesn't sleep at all, and maybe two more nights of the week, she sleeps very little.  We can kind of catnap while she's awake, but not fully sleep (and I must give a shoutout to Tony, who does the vast majority of the night caring) and Janey wakes us up often to get help with videos, ask for food, ask for car rides, all that.  We are hugely worn out.

But it all could be a lot worse.  None of us have gotten sick, thank goodness.  Janey will wear a mask to go to the grocery store, the one place we go, and Tony takes her there almost every day.  Except for when we were trying hard to recreate school at home, which caused a huge pushback from Janey and some very tough behaviors, she has been mostly cheerful, and often a very lot of fun to be with.  We are getting by.

I'll write a lot more in the week, about Janey's speech, about remote learning, about things I've discovered about how she learns, about music and car rides and siblings and so.  For now, I'm just sending out love to all of you, and hoping you are coping.  Let me know, so we can all support each other!

"Daddy just went asleep"

Early this morning, about 5:30, Janey woke me up by putting a Tupperware container of cheese on top of me.  This means she wants some cheese cut up.  We keep a knife right in the container for convenience.  In my sleepy state, I asked "Where's Daddy?", hoping he could do the job.

We ask Janey questions like that all the time, questions we don't really expect an answer to.  I've tried at times not to, to not to push her to talk when she doesn't want to.  But the questions sneak back, because that's a natural way of having a conversation, and in general, I like to talk to Janey like I would to most people.  It's easier, and it assumes competence, which is important to me.  But that doesn't mean she answers me...usually.

After a pause, I was very very surprised.  Janey said back to me "Daddy just went asleep".

It's hard to really explain how surprising that answer was, but there were many, many unusual things about it.  One is that it was original.  It wasn't echoing something she'd heard.  Almost all her speech that is more than a single word is an echo.  Sometimes it's echolalia that works just right in the situation she's in, but most of the time, it's not.  She'll say lines from a movie, or something that one of us said that caught her fancy.  She'll sing, or obsessively repeat our refusals "I'm not taking you for a car ride right now!  We don't have any salami!  It's time for bed!", things like that.

Janey will also often give yes or no answers (but sometimes mixing up yes and no).  It usually takes a couple tries.  We'll say "Do you want some crackers?" and wait for an answer, and then we'll rephrase it "Do you want some crackers, yes or no?" or perhaps "The food I want is...." giving her a fill in the blank.  And eventually, she'll say yes or not, or repeat "The food I want is crackers"

Almost all Janey's speech that isn't scripting or echolalia is used to express wants.  That's great.  We love knowing what she wants, and we will praise her heavily for saying something like "Want to go for a car ride?" or "Want to watch SpongeBob?", telling her we really appreciate her telling us what she wants.

So---what we almost never heard is speech that is original, speech that doesn't express a want, speech that answers a question, or speech that is a sentence.

When Janey does say something like she did this morning, there is a tone she uses we don't hear any other time.  It's slower, with less expression.  It doesn't flow out like her frequent scripted speech.  It's very deliberate.  And that is how she said "Daddy just went asleep"

Tony had not actually just gone to sleep.  He was in the bathroom.  But often, when Janey wakes up in the middle of the night and wants something, Tony will very justifiably say "I just went to sleep!"  And so, Janey heard my question and understood why I was asking it.  She understood the subtext---why are you waking me up to give you cheese?  Why aren't you asking Daddy?  (Tony usually is awake long before I am.  He's the world's ultimate morning person)

Progress with Janey can be very, very slow.  It can be so slow it appears not to be happening.  We can try to teach her something and see almost no progress for years and years and years.  But she's learning, at the pace she can and wants to.  Today's sentence was a wonderful reminder of that.  For whatever reason, speech of some types is incredibly hard for Janey.  I think the part of her brain that would form answers beyond yes or no, that would form original sentences, just doesn't quite work like other people's brains.  I think that accounts for the very different tone she uses for the rare times we get those sentences.  They require use of some other system in her mind.  It's like if we wanted to solve a math problem using only verbal skills, or wanted to walk without the automatic motor skills.

I don't believe in breakthroughs with Janey.  Having her say a sentence like she did today doesn't mean it's going to start happening all the time.  That's not the point.  In some ways, it's a reminder of why it's so hard for her to talk in that way.  Even in this case, the sentence wasn't quite accurate, and it wasn't quite grammatical.  But it happened, and we need to always remember that Janey had abilities and capacities that doesn't show themselves on a regular basis.

Every day, I am so proud of Janey.

Anyone else?

I've been wondering lately about quite a few traits, issue, habits and the like that Janey has---wondering if other kids like her share them.  Among the many thoughts I have about the whys of autism is that there is a genetic syndrome of some type that a lot of girls with autism share.  I don't know if that's the case, but even if it's not that, I thought I'd do a post to ask "Anyone else? Have you noticed these things about your child?"  

Lack of strong hand preference

Janey is usually right handed, but sometimes she'll use her left hand for things.  I noticed the other day when she was eating a bowl of pasta, she started out for about the first half holding the spoon in her left hand.  She switched in the middle, but it's not uncommon that she seems to pick a hand at random.  I think it's harder for her to do things with her left hand, but she doesn't always seem to realize that automatically.

Sleep issues that rotate

 

Most kids with autism seem to have some sleep issues, Janey included.  But we've noticed hers seem to go in waves.  She'll sleep a pretty normal schedule for a few weeks, then have a lot of insomnia for a while, staying up all night sometimes and other nights sleeping only a few hours.  Then she might switch for a while to going to bed very early and waking up in the wee hours, like 1 or 2 am, and not going back to sleep.  After that, she might have a period of sleeping a huge amount---12 hours at night and also taking naps.  Then, maybe going to bed very late and being very hard to wake in the morning.  Each pattern lasts a while once it starts.  

Speech that varies in frequency and clearness widely

Kind of like the sleep, Janey's speech goes through cycles.  We'll have a few weeks where she talks much more than usual, and says things we haven't heard before.  Then she might have a while of rarely speaking, and only using a few set phrases.  In addition, sometimes her speech is crystal clear, but sometimes it's almost impossible to understand, very slurred, or she might leave out parts of words.  The echolalia speech is off and on too.  There are times she quotes videos almost all day, and other times she does that not at all.

Lack of menstruation

Despite seeing specialist and having lots of tests, we still have no idea why Janey doesn't get periods.  She had one, at about 11, and a few other very very light ones around then, but since then, not at all.  She has developed normally otherwise, and looks her age if not older, but she just doesn't get periods.  I haven't really heard of other girls with autism having this issue, and I'd be very interested to know if others do, or if this is just a totally unconnected issue.

Odd eye movements

Once in a while, Janey's eyes roll up in her head, and she stares at the ceiling, and doesn't seem to be able to stop doing that for a spell of 10 or so minutes.  She sometimes gets very upset when this happens, and screams.  We have taken her to a neurologist, who says this is not a seizure---a seizure wouldn't involve both eyes.  This seems to happen more in the evening, when it's getting dark but isn't completely dark.  

Very healthy or overwhelmingly sick

For the most part, Janey very, very rarely gets sick.  She can go whole school years without missing a single day due to illness.  She doesn't seem to get the colds or stomach bugs that are going around.  However, the few times she has gotten sick, she's gotten VERY sick.  One time was the awful burst appendix, after which she got pretty much every complication possible and was in the hospital almost a month.  Another time, she got the flu and pneumonia, had extremely high fevers and was in the hospital for a few days.  At that time, some doctors said they wondered if there was something odd with her immune system, something that fought off most all illnesses but caused the few that did get through to be quite severe.

There are other things I could list, but I'll stick with those for now.  I'd love to hear from anyone about these!  

Nana and Grandpa at the hotel house

Janey at the cheese and cracker reception time

This past Saturday, I realized how very long it had been since Janey had seen my parents.  I last saw them in October, when I went up there for a few days, but for Janey, it had been almost a year.  They used to drive down here from Maine for the day, a drive that is almost 4 hours each way, but as they get a bit older, and after my father's accident falling from a ladder, they can't make the trip as easily.  On the spot Saturday, I decided that despite all that was keeping us from getting away, we'd go spend a couple nights in Portland, half way in-between us, and have them come down for the day to see us at our hotel (Janey always calls them "hotel houses").

Breakfast, which Janey did not care for

In general, Janey likes trips.  That is, she likes them under her own terms.  It must be her music in the car, music that she wants us to change constantly.  Once we get to the hotel, except for car rides, she doesn't want to go much of anyplace.  Going away with her is not really a get-away or a vacation as just more a change of scenery.  It's great she doesn't mind being away from home.  But it's also harder to keep her happy in a hotel.  At home, if we have to say no, she often screams.  In a hotel, you really can't have someone screaming the way Janey does.  We can't stand our ground unless we want complaints and the front desk calling us to see if everything is okay, something that has happened a few times.  So, we keep her happy.  On this trip, it meant letting her take about 10 showers, having her play her iPad at full blast on YouTube Kids with the same videos 20 times an hour, and working on keeping her calm when she woke up at 2 am the 2nd night.  It was relaxing to come home.

Janey checking out a water feature in the lobby

However, it was worth it to see my parents.  We did manage a lunch out at a buffet, sort of a more downmarket Old Country clone.  Everyone found plenty to eat.  We got pizza from the hotel restaurant at night.  We exchanged Christmas presents, which we had not been able to do any sooner, and we sang some Christmas songs---Janey's favorite part of Christmas.

My parents commented on how clearly Janey sings, in contrast to her speaking, and that made me face something I haven't faced much.  Janey used to speak very clearly, when she did speak.  She doesn't any longer.  Often, no-one can understand what she is saying but Tony and me.  I hate thinking it, but it's become pretty obvious her speech is getting worse over the years.  But the singing---still lovely.  I sang the beginning of lines from carols, and she finished them, perfectly.  Hearing her sing parts of "O Holy Night" brings tears to my eyes every time.

Janey sees Nana, as Tony looks on!

During the car ride back, Tony and I talked about some small changes we are going to make with Janey.  For about 4 years now, we have been pretty much doing whatever it takes to make her happy.  Overall, it's been a huge help in making all of us happy.  But lately, she has become more frantic in her demands, and she doesn't seem happy even when she gets what she wants.  The big thing that has become almost impossible is the music in the car.  Janey will not listening to about 95% of the songs we put on, songs she has previously liked.  She just constantly says "Music please, music!" which means change the song.  This makes it very hard for Tony to drive when he's driving alone with her, because if you DON'T immediately change the song, she screams, sometimes kicks the seat, and makes it very hard to concentrate.  We decided on a new rule.  We'll change music only after listening to the rest of whatever song we are hearing.  We explained this to her, and then put the rule in place, and after not much push-back, she seemed to get it.  She didn't like it, but she got it.

Janey listening to Grandpa!

We decided to put a similar rule in place about putting on TV shows and videos, once we got home.  Again, she wasn't pleased, but she seemed to understand.  We am always balancing her need for control with Tony's and my need for sanity.  We are all in this for the long haul, and we as parents were starting to quite frankly be at the ends of our ropes.

Being away, even for a few nights, can give some new perspectives. They aren't always easy things to face.  We need to try to figure out Janey's speech regression.  We need to take back some control of routines that have started to make our lives very tough.  We need to find a way to see my parents more, while still being around for Tony's brother, who has been in and out of the hospital for a very long time now and who has severe health issues.  We need to take a hard look at our finances, which with Tony's retirement have become much more of an issue, making even 2 nights in a hotel a luxury we can't often do.  We need to have a life that better balances Janey's needs with our own.  None of these are easy tasks.  But they are necessary.

"I hate you, Mama!"

Yesterday after school, Janey got off the bus cheerfully, and I was determined to keep her that way.  We snuggled, I gave her each snack she asked for, a shower when she requested one, and then I put on the shows she wanted.  And changed the shows when she changed her mind after a second or two.  And again.  And again. And again.  Then the phone rang, a doctor's office wanting to set up an appointment, so I couldn't instantly change the show.  I managed to get the call done over Janey's increasingly loud requests.  Then I said "What show do you now?"  I do freely admit my voice had a hint of annoyance in it.  I wasn't yelling, I wasn't openly angry sounding, I don't think, but I didn't sound patient.

That was enough for Janey to get furious.  She screamed, bit her arm and spilled a bottle of soda on the floor.  I made her help me clean it, and then put on the show she wanted, which she instantly turned off, glaring at me.

Then she said her favorite new phrase.  For background, I'll say that one day when she was very angry and lashing out, I told her she needed to tell me how she was feeling in words, and I gave her a lot of example phrases---"I'm angry at you, Mama!  You made me very mad!  I don't like what you did!  You aren't listening to me!"  And then, because she learns through hearing phrases and I don't want to censor her, I added "I hate you, Mama!"

Well, she ignored all my other suggestions and went right for that last one.  Since then, she's been using it often.  Sunday night, she screamed it in fury so Tony could hear it a house away.  And yes, that is what she said yesterday.  "I HATE you, Mama!  I HATE YOU SO MUCH"

I was proud she added in that last part of the phrase herself, despite the sentiment.  I said "It's okay if you feel like you hate me right now.  I love you anyway.  Sometimes people do feel like they hate their mothers, and other times, they feel like they love them".  Just so she was clear where she stood at the moment, she said "feel like you HATE your mother!"

I have to admit---I kind of liked the idea that having an autistic, low verbal teenager might mean that I would escape some of the teenage drama.  It seemed like I had, at first.  But lately, I am reminded that in so many ways, Janey is like any other teenager.  She has times when I annoy her and anger her to the point she can barely take it.  I get that.  And I know how that might be even harder to deal with when you aren't able to fully communicate what you want all the time, and when you spend a lot more time with your mother than most girls your age.

We're seeing more signs of Janey growing up lately, and we are realizing more than ever how much she understands without being able to fully show her understanding.  In the last month, Tony and I have both noticed how much she monitors everything we say, especially actually when the conversation is not directed at her.  She is quite an eavesdropper.  We can be chatting away, and somehow say something about going someplace, and she is instantly next to us, saying "Shoes on!  Go for a car ride!"  Or we are talking about food, and she runs over and adds her two cents worth---"Go to the store.  I want salami"  or "Pizza!  I want pizza!"

It's hard, because much more than actual words, Janey picks up on tone and mood. Contrary to many beliefs about autism, Janey is better at sensing moods and tone of voice than anyone I know.  The slightest hint of argument or sadness or even when we take a serious tone in a conversation gets her very upset.  And the opposite works---if she's upset, we can sometimes make her happy by talking to each other in an upbeat way and laughing (but it has to be sincere laughter---she knows the difference)

It can be easy, even for parents like us with quite a few years now of autism parenting experience, to fall back on some of the silver lining thinking about autism, thinking things like "At least she's always be our little girl!  At least she's spared from adult worries!  At least she doesn't want to purposely make us upset!"  But thoughts like that aren't fair to Janey.  They make her less than---less than a full, complex person.  We need to always keep in mind Janey's age.  She is growing up.  She's going to be angry at us, sometimes.  She is growing in understanding, even if we don't always see the growth day by day.  We need to adjust our thinking, to treat her with respect, and yes, to teach her to treat others with respect.  It's not always going to be easy, but not much about this whole gig is. Nothing worth doing usually is.

What the AAC consult said and what I think

At Janey's IEP meeting, I requested she be evaluated by a specialist in AAC (Augmentative and Alternative Communication).  She has had access to an iPad with Touch Chat, an AAC program, at school, and we recently got her a new iPad at home and put Touch Chat on it.  My main goal with all of this is to find a way to decrease Janey's frustration with what I think is word finding problems---when she knows in her head what she wants to say, but can't find a way to say it.  I also just wanted to give her another way to communicate, because although she does talk, her speech is limited.

The consult was done about a week ago, and I got the report this week.  It was a good report---thoroughly done, and I felt the woman who did it got a pretty clear picture of Janey's speech as it stands now.  Her conclusion?  That AAC apps are not something that will help Janey's speech, that in fact, they actually distracted her from communicating functionally.

I was not totally shocked by this conclusion.  There's a couple reasons for that.  One is that for years, I had sort of thought the same thing.  When I had downloaded test versions of several systems like Touch Chat, Janey had no interest, and in fact really seemed to not like the programs.  She even said one time, when I said something like "this can help you talk", a very clear statement "I CAN TALK"  The other reason is that I have been told through the grapevine that the powers that be in the school system (not the teachers or therapists, but the higher-ups) never want to say kids will benefit from AAC, because then they have to pay for iPads or the like.

However, I have to say I don't think I agree that AAC is not a useful tool for Janey.  The main reason the woman evaluating Janey concluded it wasn't is that although she can navigate the system and she show an interest in exploring it, she isn't using it to communicate.  My answer there is---Yeah.  That's why I would like her to get HELP with using it.  It seems like what is being said is something like "She shows she could use it, and she shows an interest, but she doesn't already use it to communicate, so we aren't going to recommend teaching her to communicate with it"  That seems like saying "well, this kid has the capacity to read, and is interested in reading, but she doesn't read yet, so we won't teach her"  It just doesn't seem to make sense.  And isn't exploring a way to learn?  When babies learn to talk, not every single utterance is for communication.  The tester noted that Janey kept pressing the "stop" and "go" buttons, over and over, without a break.  Maybe she was figuring them out?  Maybe she wanted to learn them by repetition?  Maybe she was just having fun with them, and what is wrong with that?

Also, Janey DID, in the presence of the woman doing the evaluation, communicate with Touch Chat.  In the report, she said Janey navigated through a few levels of the application to say "Eat Goldfish Crackers"  However, the reports said that the tester didn't have any edibles with her, and it didn't seem to bother Janey, because she didn't seem to be asking for something to eat.  Now, just exactly how did the woman doing the test know that?  When Janey used the device to say something, why was it assumed she wasn't really saying what she was saying?  I do know the impulse to think "She doesn't really mean that".  For example, at home, Janey has quite a few times gone through several menus to make Touch Chat say "I don't want to wear white.  I want to wear orange"  Because Janey has never, even either shown she knows colors or objected to any certain color being worn, my first impulse was to just think she was playing around.  But I realized that's a pretty big thing to assume.  Maybe Janey never had a WAY to tell me that before.  Maybe she really does hate white clothes.  Maybe she wants more orange in her wardrobe.  No matter what, it seems pretty presumptuous to give someone a way to communicate and then when they do, to assume it means nothing.

To be fair, I really am not sure myself if AAC is going to help Janey with communication, and I don't know if Janey wants to use it or not.  After the initial few days with the Touch Chat (and Proloquo) at home, Janey has been rejecting using them, at one point very pointedly by means of hitting me in the face (I made her stay on her bed and not have TV for a while, but I left the Touch Chat out for her in case she wanted to speak ill of me on it!)  But I think she deserves a chance.

The good part?  Janey's wonderful teacher agrees with me.  Today, I sent her new iPad into school, and the teacher is going to update Touch Chat with things like the names of her classmates and with phrases they working on.  She is going to continue to make it available at school, and we will continue to make it available at home.

I'm trying not to get discouraged.  But at times, I do.  It has seemed over the years this same kind of scenario has played out a lot.  I am told there's some kind of help available.  When I actually decide to try to get that help, it's not actually available in Janey's specific case.  This isn't quite like that.  Nothing stopped us from getting Touch Chat on our own (and I'm glad we did, because if we had wanted to get it paid for by the schools, we would have been out of luck).  We are so, so lucky that Janey has a teacher that believes in her and works closely with us to coordinate our efforts.  But still---it feels often like a theme.  Janey just doesn't quite fit into any program.  She's not "high-functioning", as the music classes we looked into required.  Special Olympics, while friendly and welcoming, was not at all aimed at kids like her.  And now, her particular combination of being able to talk some and not being instantly inclined to communicate through technology---she isn't quite right for AAC either.

More and more, I realize there just isn't a lot out there to help.  And more and more, I appreciate the hands-on school people, the teachers and therapists and aides and all that don't say "she's not quite what we are looking for" but instead just accept her and work with her and love her.  And that is what we will keep doing at home, too.

Fill-In-The-Blanks talking

We've always done a bit of fill in the blanks talking with Janey.  It goes something like "I am crying because...." and hoping she'll fill in the reason, or maybe "The food I want is...."  We've had mixed results over the years---generally, honestly, not that great results.  But once in a while, it works.  However, lately, for whatever reason, it suddenly seems to be working very well, and it feels like a little bit of a communication breakthrough. 

Here's a recent conversation with Janey, with her words in italics.  The background is that she wanted a shower just before I knew Tony was about to come home and give her a car ride, something she'd want even more. 

"A little bit ago, Janey wanted to take a...shower.  But Mama said...yes"

That's something we see a lot in the fill in the blank talking.  Janey gives the answer she WISHES would have been the answer.

"Janey wishes that Mama had said yes.  But really, Mama said...NO!"

My no responses are always told by her as being extremely loud and mean sounding!

"When Mama said no, that made Janey very....angry.  Janey was so angry that she...hit Mama"

Another example there of the answer being what, I think, Janey WANTED to do!

"No, Janey didn't hit Mama, and Mama was very proud Janey remembered not to hit.  Instead, Janey....(here I opened up my mouth very wide to give her a hint)...screamed....very, very...loudly!"

"And then Mama said if Janey could calm down a little, when Daddy got home in a minute, he would take Janey for a...car ride.  That made Janey feel....happy.  And Mama was happy because Janey was being such a good girl"

There she surprised me a bit.  I was going for "Janey calmed down".  I try not to use terms like "good girl" too much, but I guess I must, as that's what she said!

Today is a snow day.  Tony is home as well as Janey.  First thing in the morning, Janey was ready once again for a car ride.  We did a little fill in the black talking after we told her no to that.

"Janey wanted to go for a car ride, but Daddy said...YES!"  

Again, the answer she wished for!

"No, actually Daddy said no.  He said no because outside there is lots of....snow"

We were surprised by that.  We had mentioned the snow, but we weren't sure Janey had made the connection.  It was so good to know she had, that she understood there was a reason for no car ride. 

"Yes, there's lots of snow outside.  And if we drive in the snow, the car might...go smasha-la-rasha!"

It's possible I've used the term "smasha-la-rasha"....

A third great round.  Janey was at loose ends a bit ago, not happy at all. 

"You know, Janey, today things seems a little different, and that can be scary.  Things seem different today because there is no...school"

That was a great one.  I hadn't been talking about how this was a snow day---I just wanted to see if she realized that it was a day that would usually be a school day and it wasn't.  I've known for a while that Janey has a very good idea of what each day is supposed to bring, and she really doesn't like days off in the middle of the week, but this was the first time I've been able to kind of prove it to myself.

After we have a conversation like those above, I've noticed that Janey gets very, very happy.  After that first conversation about the shower and car ride, Janey gave me a huge hug, and then that look, the look I love so much, the connected and contented look.  It's a look I only get once in a while, a look that is hard to explain but that I think a lot of you out there know.  It's the look of minds meeting, of a connection without barriers.

It's wonderful to hear what Janey has to say.  And the fill in the blank method seems to work better than almost anything we've tried to really get to hear her own opinions.  I think it's because her main speech problem has always been word retrieval.  She knows so much, but getting it out is so hard for her, as is forming sentences.  If we take away a lot of the variables and work, if we make it so all she has to retrieve is one word or phrase, not a whole sentence, it seems to free her up to say what she wants to say.  And I love, love, LOVE knowing what she wants to say.

As time goes by...thoughts, concerns and moments of connection

I haven't written as much lately as I used to.  There are a lot of reasons for that, and some of them are beyond the scope of this blog.  But some of it is that Janey is steadier than she used to be.  She is more settled into routines, and mostly happier.  For the most part, that's wonderful.  I would never want to relive some of the past years, especially what I think of as the Hospital Years, or the Changing Schools Years, or the Non-Stop Screaming and Arm-Biting Years.

There are still challenges, to be sure.  One is sleep.  For weeks, Janey fell into a pattern of going to bed around 5 pm.  Nothing anyone could do would keep her up.  When someone is determined to sleep, they sleep.  Of course, the other side was that Janey would wake extremely early---often at 1 or 2 in the morning.  And she would stay awake.  When she's awake, one of us has to be at least sort of awake.  We are at the point now where we can cap-nap in the same room as her, but never fully sleep, as we need to be alert to what she's doing, and she often makes sure we are not fully asleep by suddenly thrusting a TV remote or bottle of soda or stick of cheese in our faces and making demands.  After a few weeks of that, we fall into sort of a half-life.  You never feel fully awake or fully asleep.  Knock on wood, she's back in a better cycle---bed about 7, up about 4:30 or 5, which works with her bus arriving at 6:15.

Another challenge, or concern, is as always Janey's speech.  Her speech is highly cyclical, like everything else about her.  Sometimes she talks much more than others.  But overall, her talking has settled into a fairly low point.  She says only a limited amount of things, and even the things she does say are often said in mumbles, hard to understand, or in a very rushed recitation of a phrase.  She has a great speech therapist right now, and a teacher who seems terrific, but these cycles of speech don't seem very affected or changed by anything external.  Lately, her default answer to almost all questions is something like "That one!"  We ask "What show do you want?"---"That one!"  "What do you want to eat?"  "That one!"  I think she truly thinks we can read her mind.  Or she's mentally using a choice board and pointing to what "that one" is.  Whatever it is, it's frustrating.

There was a presentation at Janey's school today about the various high school choices in Boston.  Janey's in 7th grade, so there's another year before I have to choose, but I want to stay well on top of it and do a lot of school visits.  The presentations varied widely, and I think only actually seeing the programs will answer some of the questions I have.  But I'm clarifying my vision of the kind of program I want.  I want one where the challenges are appropriate, where Janey is accepted as who she is.  I think of a video game analogy.  I don't want a program where the sole goal is leveling up.  Janey isn't going to get a high school diploma.  She isn't going to hold a non-sheltered job.  She isn't going to live on her own, or even be able to be alone at home ever.  I want a program where she can be a success by being who she is, not by others striving to make her what she isn't going to be.

It's interesting how as Janey gets older, I think a lot less about how she is disabled and a lot more about just how she IS.  If she is happy, and she makes life so Tony and I can also be happy, and she is cared for and loved, that is wonderful.  The most wonderful times of all are times of shared happiness with her.  I had a moment like that the other day.  Janey, as I've written about often, loves Christmas music.  This year, she is very taken with "O Holy Night".  Not every version, as she let us know firmly when I played through a lot of versions on Slacker Radio with her, but when she hears a version she loves...wow.  I played such a version the other night, Nat King Cole.  Janey and I lay together on her bed listening to it, and our eyes locked.  The look in her eyes---I can't even think about it without crying.  We were both completely overwhelmed by the song, and we had one of those rare moments of pure connection.  They are the moments I live for.  In some ways, Janey lives in a different world than I do, but at moments like that, we are completely together.  It's hard to explain, but I'd guess others have had such experiences with their children like Janey.

I'm thinking of all of you this Christmas season.  I'm having a hard time this year, troubles and worries that are nothing to do with Janey occupying my mind often.  I wish so often I could spend time in person with so many of you I've met throughout this journey.  What I wouldn't give for a bunch of us to sit down and talk and eat and laugh and cry....  I hope December is a happy month for you all.

Janey's end of the spectrum

I don't like the term "low-functioning autism".  I don't like it, but I use it sometimes anyway.  I use it because "autism" has come to encompass such a range that it's very hard to explain to those who haven't met Janey the level of care she needs. 

Janey

I don't like the "low" part of the word.  Janey isn't lower than anyone.  She's as valuable a part of society as anyone else.  She has much to offer the world.  She is an interesting, complex, talented person.  As she gets older and Tony and I are better able to understand her, I realize that in so many ways, there are easier parts and harder parts of raising any child at any age.  We are used to Janey's harder parts. They are still hard sometimes.  When Janey screams all weekend as she did a few weekends ago, when she is in pain and can't tell us how or where, when we need to change her bed almost every night...that's hard.  But she's 13, and she has never once said she hated us.  She's never made a snide comment in her life.  She is excited, thrilled even, by a drive-through trip to McDonalds.  Her joy when a song she loves comes in in the car---it's a joy so infectious that I can't even imagine much that is better.

However, she has care needs that are far beyond what most 13 year olds have.  She cannot be alone, not for a moment.  She is not fully toilet trained.  She can't read, write or most of the time talk in full sentences.  She cannot dress herself completely.  

Janey will never live alone.  I used to modify statements like that with "most likely..." but I don't anymore.  She is not going to live alone.  She will live with us until we are gone.  Then...well, that is part of why I want a term that explains Janey's needs better.  That is one of the  black holes in my thoughts.

The other black hole, one I can barely think about or write about, is the fear of abuse.  It is why I no longer think much about respite.  I trust Janey's school, and I trust my family, and close friends.  But respite, paid respite, is not coming from those sources. And I can't pay enough to have Janey cared for in the way I would feel comfortable with, not in this part of the country anyway.  I would want Janey cared for by someone extremely knowledgable both about autism and about her in particular, and I would want there to be a formal backup in place for that person at all times.  Caring for Janey is a high intensity job.  If the caregiver needs or wanted a break, they need to be able to take one, and that is where I think often the problems occur---either when someone is at the breaking point or when they leave a child in the care of someone else for a bit.  Respite for people like Janey needs to be a well-planned, well-vetted, well-staffed situation.

Someday, Tony and I are not going to be on this earth.  And before that, someday I imagine a day will come when neither of us can care for her, and her brothers can't either.  And that is where it's going to become important for society in general to understand her needs, and of course not just her needs, but the needs of others like her, those on the higher need end of the autistic spectrum.

If we don't talk about the needs of children like Janey, if we focus only on being positive, or only on children who are more able to care for themselves, we can't expect people to understand what her needs and the needs of her peers are.  There are those who might say I shouldn't speak for Janey.  I can respect that view, but I also respectfully disagree.  Although Janey certainly can communicate, she can't do so in such a way that explains her needs.  I would rather face my last days in the future knowing that society understood and has provided for Janey's needs than having remained silent about those needs.

Call it what you want to.  Call it severe autism, or low-functioning autism, or classic autism.  But there is a huge divide between Janey and a child who will someday be capable of living on their own.  They both certainly may be autistic, in the wide sense of the world, but at the end of the day, Janey needs a higher level of care, and it is desperately important that those with the power to make fiscal and planning decisions realize that.  We need to make society aware that children like Janey exist, and are worthy of the best we can give them.

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.

As 2016 ends...

2016.  A lot of people seem eager for this year to end, but for us, and for Janey, it was overall a good year.  It held far less ups and downs and dramas than the last few years---no burst appendix, no psychiatric hospitals, far less days of crisis.  It feels mostly like the legendary prophesy I've always heard, that life with a child like Janey gets easier in time, has come to pass.

What caused this?  Much of it is just Janey growing up, and in a way, us growing up too.  After the years of crisis, we made a decision, unconsciously, to change instead of asking Janey to change.  It's not like we woke up one morning and suddenly became radically into total acceptance, but we somehow realized that everyone is happier if we let Janey be Janey, if we embrace the things she loves and minimize the things she doesn't.

There are other factors too.  She is in a stable school situation.  I think the change of schools when she was in third grade had a huge destablizing effect for a couple years.  It was probably a necessary change, but I am not sure if I had it to do over knowing how much it would throw her off, I would have agreed to it.  But now she's been in her new school for years, and it feels familiar and comfortable to her.  The medication she is taking seems to be helping, too.  Her brothers are away at college, and although we all miss them hugely and love it when they are home, she is essentially an only child when they aren't, and she loves the undivided attention. 

I'd be amiss if I didn't give credit to music, too.  Music is such a huge part of Janey's life.  She knows what she likes, and she is an extremely interactive listener.  When she hears a song she loves, you would have to be devoid of any sensory input to not know how much she loves it.  She rocks and rolls and screams in delight and asks to hear it over and over and simply shows joy that I wish every performer of the songs she loves could hear---it would be a tribute they wouldn't forget.  Her tastes are eclectic.  She loves Christmas hymns and Twisted Sister and the Beatles and banjo music and the occasional Chipmunks and too many others to mention.  There's much she doesn't like too, and she lets us know in no uncertain terms---when a song comes up that she hates, she said "I want MUSIC!", letting us know that whatever horror we are playing doesn't deserve to be called music.

I need to be honest, though, and say at times, I feel a lot of sadness over the equilibrium we have reached.  I wish I didn't, but I do.  Janey talked less in 2016 than she did in probably any year since she first regressed at 3.  That was hard to take.  Her speech has slowed down.  She uses familiar phrases and simple requests, mostly.  The other day, I was remembering a time when she was two, when we were in a waiting room and there was an old lady there, and Janey said "I don't like she!"  The lady heard and it was of course hugely embarrassing, but the thought of her expressing an opinion that directly and easily---I suddenly started to cry very hard, thinking how she can in no way do that now.  I was driving and had to pull over.  I accept Janey's speech, I am glad she talks as much as she did, but still, I must admit, I feel a huge amount of sadness and anger over whatever took her speech away.

At points this summer, I thought we might actually have the whole toilet training thing down.  But we don't.  That area has regressed badly.  Sometimes I am ready to simply admit Janey might never be trained fully.  It would be a relief to admit that.  She manages at school in underwear, but lately she comes home and immediately soaks herself, and I wonder if she is working very hard to hold in urine at school all day.  At home, although we take her to the bathroom endlessly, she very often, very very often, has "accidents", and I am starting to feel that even just thinking of them as accidents instead of just her doing the best she can do is doing her a discredit.

With all this being said, what I most wish I could portray with words is how much joy Janey brings us, what a wonderful person she is.  When she is happy, she is the happiest person you can imagine.  She makes everyday little things feel like the world's biggest treats---shopping for salami, hearing a great song, snuggling, sneaking a drink of coffee, giggling over nothing.  There are times Tony and I look at each other and smile, and we are both thinking that few typical 12 year old girls would love their parents as unabashedly and exuberantly as Janey does.  As I was writing this, Janey made her most common request---"Snuggle on Mama's bed?" (the bed is hers, not Mama's, but the phrase doesn't reflect that!)  As I snuggled her, I asked her if I could take her picture.  Here's that picture--messy hair and all---which might give you a little idea of the joy that girl's face can show.  

Happy New Year to all, and may 2017 bring you all joy.  

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.

Five years ago, but it could be today

Just now, I read the blog post I'd written about Janey five years ago, The Patience of Job.  It wasn't an especially mind-blowing post, or one about anything major.  It was about how much patience it took to get through one morning with Janey, one where she woke up at 1 am and I had to get through until school started, which at the school she went to then was about nine

Janey five years ago

.  I was curious how other years had been around this week of the year, as this was the week that two years ago Janey wound up at the psychiatric hospital.

What struck me most about what I read was how very similar to today it seems.  Janey's speech, her interest, her behaviors...so little has changed.  She still asks for the same things, with minor variation.  She asked for baths then, now it's showers, she was more into Kipper and Barney then, which she still does watch, but more often Scooby Doo or Courage the Cowardly Dog.  She still constantly asks to snuggle on the bed.  She no longer asks for bottles (babas), which even then really meant just milk in a glass, but she still asks for cheese and cabbage a lot.  Her sleep is better than then, but there are still sleepless nights now and again.

Janey's lack of progress in many areas is one of the things that has been getting to me lately.  Speech is the biggest area in which she, if anything, has regressed a little.  She talks pretty much exactly like she did five years ago.  What has been hitting me all the time lately is that she speaks far, far less than she did ten years ago, when she was two.

Over the years, I haven't thought about Janey's big regression that much.  Mostly, that is because I can't bear to.  I have consciously put it out of my mind.  I don't know why it's sneaking back into my mind lately.  But until about Janey's third birthday, she talked a lot.  Her speech had some oddities, but it was good, even very good, for a two year old.  She was followed closely by Early Intervention, and she never had speech therapy---I even remember them joking about how little needed it would be.  It bothers me some how little I can even remember of that fluent speech.  It would jar my memory to watch the few videos we made of her, but I can't do that.  I have tried, maybe twice, and simply fallen apart and turned them off.  But I know she spoke well, well enough to tattle on Freddy for showing her a scary Sesame Street parody "on the internet", well enough to talk non-stop one day about how much she wanted to go to the playground, as I remember timing it sitting here by the computer and noting she had talked for five minutes non-stop.  Enough to tell a friend's daughter that they would be "best friends forever"  And I have to stop remembering now, because I'm crying.

Most of the time, I don't get caught up in "why".  It's useless.  But something has hit me lately that I am thinking "why" a lot.  Why hasn't Janey progressed, when so many kids with autism do?  Why did she regress in the first place?  What happened?  WHY?

I'm not going to talk politics here, although of course tomorrow is Election Day.  It's been a depressing election season, and that hasn't helped my gloomy feelings.  But whoever wins, at whatever political level, I wish they could meet Janey.   It is ironic that people like her are the least able to speak out about what they need and want from government, but are perhaps the most affected by the whims of government.  I am terrified of my own aging, because I am terrified of a world where Janey doesn't have parents to protect her.  I'll close with a picture I took of Mayor Thomas Menino's gravestone.  He was a politician of the best kind, and the quote on the stone is something I wish all politicians took to heart.