Friday, January 13, 2017

The Imaginary Conversation

Lately, I've been imagining a conversation a lot.  It's a conversation with someone who has just had a child diagnosed with autism.  In my mind, the child is a girl, like Janey, and is about Janey's age when she was diagnosed, just over three.  It's not too hard to figure out I'm probably really imagining a conversation I would have liked to have had with someone myself, but either way, I've been giving it a lot of thought.

In my imagined scenario, I've invited the mother (it could be a father, too, but it's a mother in my head) to my house, along with their newly diagnosed daughter.  I'm including her because I want to have a place they both can go that is judgement-free, where there has to be no worries about behavior, and because I know it can be hard to get out of the house alone, and I want this mother to be able to come over.  I make us both some coffee, and we sit down, keeping an eye on the little one, putting on a video if she likes that.  Then I start telling her the four big things I want her to know.

The first is that there is nobody, nobody at all, who knows how this will all work out, who knows what her daughter will achieve or not achieve.  I'll tell her that I know she is feeling scared and also feeling hurried, like she needs to get started THIS MINUTE with some kind of therapy, and that there is no shortage of people giving her their particular ideas what will help.  But I want her to know that I feel most kids are going to be what they are going to be.  It's not that love and caring and attention and help are not important---they are, and they let the child reach the full potential of what they are meant to be.  But nobody knows what that potential is.  As a friend said on my Facebook group page recently, there are kids who start out not talking who wind up in graduate school, and there are kids who are very mildly affected who never progress at all, or even regress.  And in both these groups, there are parents who care and love and are dedicated to their child, but in both groups, there are parents who tried everything and parents who took a more measured approach.  There is no one right way, and there is no route to any one outcome.

With that in mind, I'll say something else I feel is very, very important.  I'll tell the mother to enjoy her daughter.  I'll tell her to delight in her, to have fun with her, to get a kick out of her.  Sometimes, because we are taught to see the autism as something to be fixed, cured, changed, we feel like if we delight in a behavior that might be part of the autism, we are somehow not with the program, we are not being single-minded in our quest to fix this all.  And that is just wrong.  We need to be able to feel joy in what our child is right now.  Laugh along with them as they echolalia their way through a video, enjoy their latest obsession along with them, play with them at the level they are at.  Janey is twelve, and she still loves baby games sometimes---peekaboo, patty cake, "where are you?" when clothes cover her eyes.  And I love playing them with her.  There's nothing wrong with that.  There is nothing wrong and everything right with feeling proud of your child, feeling joy in who she is.

Then I'll talk about the harder parts of it all.  Not to jinx them or scare them, but I'll tell the mother that there will be some very, very tough times.  There will be nights so long it's impossible to think there will be a morning associated with them.  There will be calls from school that shock and chill you.  There will be moments of despair, of feeling that if we can get through the next ten minutes, it will be a miracle.  There will be anger at those who don't get it.  There will be resentment of friends with kids for whom everything seems to come easily and they don't even seem to appreciate it.  There will be tiredness, tiredness so extreme there should be a separate word for it.  There will be frustration, and horrible cleaning jobs, and days that feature absolutely nothing but one strategy to get by after another, until finally the day ends.    I will tell them that during all these times, they will feel extremely alone.  They will think that no-one else in the world has lived this life.  They will look sometimes to the internet for help, and find only cheery, bright stories of progress.  They will look for advice and find that of "experts" who have never been awake all night with a screaming child who can't tell you what is wrong.  And I will tell that mother she is NOT alone.  I will tell her many, many of us have lived this life.  We might not talk about it or write about it much, for many different reasons, but we are there.  I will tell the mother when she feels completely alone, imagine a circle of mothers like herself, the middle of the night autism mothers, all raising a cup of coffee to her.

The last thing I will tell her is the thing most like a directive, like a command.  I will tell her that if her child is physically sick, she MUST insist on the same medical care any other child would get.  I will tell her about a night Janey had a high fever and was shaking enough so it seemed like a seizure, a night we called an ambulance and took her to the ER, a night that the doctor there didn't want to "upset" her, and so did a brief and useless exam, and never once touched her belly, the belly where an appendix most likely had already burst.  I will tell her how it took three days for that burst appendix to be found, leaving her with complication after complication.  I will tell her we could have lost Janey's life because someone didn't want to "upset" her---or in another way of looking at it, didn't want to bother with a screaming and hard to deal with autistic child.  I will tell her that she must tell all doctors that if there is anything they would examine on a typical child, they must exam it on Janey, and we will restrain her if necessary.  We would rather have her upset than lose her.

Then, after that intense talk, after in my mind we are both crying, and that has upset her little girl, and I have apologized for that, and we have laughed together at how much coffee we have had, and she is ready to go, I'll hug her and wish her all the best.  I will tell her that her daughter is amazing, because I am sure her daughter will be amazing.  And as they leave, I will cry to myself a little more, thinking of all they are going to discover together.

Tuesday, January 10, 2017

When Janey was diagnosed

When reading accounts of parenting children with autism, the moment that the family receives the autism diagnosis is almost always written about in detail.  I was reading a few such accounts lately, and it struck me that, although Janey being diagnosed was certainly a fairly major point in the timeline of our lives, I don't remember it as being quite as stark a blow, as frozen in time a moment as often seems to be the case.  I didn't remember the date until going back to the first entry of this blog---it was Saturday, December 8th, 2007.  Janey was three years and almost four months old.

I started thinking tonight about that time, and it became clear to me quickly why it seems a bit of a blur in memory.  It was a horrible time, in many ways---I can say Janey's diagnosis was one of the least troubling parts of the months around that time.  The month before, in November, I had been put on a jury of a murder trial, an incredibly sad murder of a four year old boy.  It lasted three weeks, putting a huge strain on everyone emotionally and logistically.  Janey had started 3 year old preschool in September, half a day, at the school the boys had both gone to, as a regular, non-special-ed student.  So someone had to get her in the middle of the day at school.  Tony missed a lot of work.

While I was on the jury, in the middle of the testimony phase, my sister's fiancee died suddenly.  He had been recovering from heart surgery related to Marfan's Syndrome, and it looked like all was going to be okay.  Getting the call that he had died---I can't even think about it, ever, without crying. The sadness I felt for my sister, and the incredible frustration that I couldn't even go to the funeral, couldn't be there for her as I wished I could without disrupting a huge trial----it is with me still.

Other factions were stressing us strongly during this time.  A very close friend from childhood was going through a family crisis that I won't get into except to say it was the worst family crisis you can possibly imagine outside of a death.  The boys were in 5th and 7th grade, both having a somewhat tough year.  Tony's office was on the verge of closing, and he was looking for a new job within his organization.  And in the background, always, there was the creeping realization that something was happening with Janey, something terrifying.

Janey, about a year after diagnosis
I wish I could remember more about the year Janey was two.  If I had known it was the last year she would talk easily, the last year I'd have a conversation with her, the last year she'd seem truly happy---well, I can't write much about that.  I just wish I'd recorded every minute of that year.  Then again, maybe it's good I didn't.  I have never been able to watch the few videos we do have.

The August before Janey started preschool, we took our three week cross country driving trip.  I've written about that before.  I had started noticing some signs of withdrawal, of odd behaviors, in Janey that June, but it was during the trip she seemed to slip further away.  The day she started school, I asked the special ed teacher in the room (her school was an inclusion school, with a regular and a special ed teacher in each room) to let me know if he had concerns about her.  It was, of course, during the middle of the trial, on an afternoon we had off, so I was able to get her at school, that he told me he did have concerns---quite major concerns.

And so---we got on the fast track to have her seen at a clinic.  She was evaluated (after I filled out realms of paper and did lots of phone interviews) by a developmental psychiatrist and a developmental pediatrician.  And that was the day, that Saturday, that they told us she was autistic.  We got a formal report later on, but by that point, they didn't need a lot of time to see what was pretty obvious, so they told us the same day they saw her.

I don't remember the rest of that day.  I don't remember crying, although I'm sure I did.  I don't remember what we did after the visit.  I don't remember much.  Maybe that is why I started the blog, three days later, to start recording what was happening, to not let it slip away like the first three years of her life seem to have in my mind.

In some ways, maybe it was good that her diagnosis came in the middle of such a stressful time.  Maybe it let us not focus on it.  But I think it also didn't let it quite sink in.  For a variety of reasons, I don't think I truly believed it.  I think I thought we'd have some tough years, sure, but I think there was a part of me that felt it all was a mistake, that I'd play along but not really buy into it all.  Maybe that was my way of coping.

I'm going to write soon about what I wish those early days after her diagnosis had been like, and what I'd do if I knew someone going through early days like that.  But for now I will stop, because I want to come back to the here and now.  I'm glad many years have passed from that time, and our lives are calmer.  I'm glad I will never have to relive 2007.  I'm glad to be here, in 2017, living today's life.  Very glad.

Thursday, January 5, 2017

Flashback

Janey went back to school yesterday.  It was a good Christmas vacation.  She was happy a great deal of the time, and I think she enjoyed herself.  But she seemed pleased to be going back to school, back to the routine she likes.

She came home in a good mood yesterday, and I think school went well.  But something set her off around bedtime---tiredness or frustration over something she couldn't explain or who knows what.  Suddenly she was screaming and biting her arm and kicking and in a full meltdown.

That's when I said, without thinking, "I don't want to take her back to Bradley"  Bradley is the psychiatric hospital Janey spent time over two years ago.

Tony looked at me in surprise.  Once Janey was calm enough for us to talk, which actually didn't take long, he said "You are usually the one telling me not to jump ahead to the worst possible outcomes"  He was so right.  And I've been thinking about what I said all last night and all this morning.

I don't know what stress flashbacks technically consist of, but I think I had one there.  And I think I have them a lot.  No matter how well Janey is doing, it almost always feels a moment away from disaster.  She can be having the calmest, happiest day possible, and I fear that something will happen and things will go horribly downhill, and we will wind up in a hospital of one kind or another, or wind up getting a call from school that we need to have a meeting, we need to talk about her placement, or that Tony will call me from a ride with her and say she undid her seatbelt somehow and caused him to crash, or that some other random disaster will hit.

Thinking about the whole thing yesterday, I keep somehow connecting it to an article I read, one that on the surface doesn't have much to do with her meltdown or my reaction.  Here's a link to the article...link.  It's about a boy with autism who has won a Rhodes scholarship, after his mother took him out of school and gave up a career in medicine to homeschool him when he was eight.  It's a very nice article, and it's wonderful news, and inspiring.  But for some reason, it bothered me a great deal to read.

I've read plenty of articles about autistic people who have done great things, and they often include a parent's huge devotion helping them along.  I think this one just hit my eye at the wrong time.  Janey did so well over vacation, and I read this just as I was worrying about her going back to school.  There is no way I'm going to homeschool Janey.  I couldn't do as good a job as the schools do, and I need the respite desperately.  What hit me was the devotion of the mother.  Truthfully, I feel I'm pretty devoted to Janey.  And looking at all the parents I know of kids with autism, either in person or through this blog, there is so much devotion out there it's incredible.  But it doesn't all lead to Rhodes scholars.  And I'm not saying there shouldn't be articles about the times it does.  There should be.  But sometimes, despite my better judgement, it makes me feel like I somehow didn't devote enough, or didn't put my devotion into the right ways to help Janey.

Both my flashback and my reaction to the article are parts of the stress that I think most of us parenting children like Janey feel.  No matter how well things are going, we remember when it all fell apart.  No matter how hard we work at being good parents, we can find examples that make us feel like we didn't do enough.  I wish I had a pithy thought to put here, something to reassure myself and everyone else reading this that everything is going to be fine, that we are doing all we can for our kids, that we shouldn't have the fears and doubts we do.  But I don't have a thought like that.  I have only a hope that if you've also suddenly flashed back to the darkest times, if you've read an article that makes you feel like a slacker, that if you have lived this life too, you're not alone.


Saturday, December 31, 2016

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.  

Wednesday, December 14, 2016

Thoughts during the calm

Calm Janey
My friend Julie said to me recently that it seemed like life with Janey was evening out as time went by.  That struck me as a very good way to put it.  The last year with Janey has mostly been a year of evening out.  Her lows are higher, her highs lower, and she spends more time in the middle.  There's still tough days, and still amazing days, but most days are..days.  Which is good.  Which is very good, actually, compared to some of the hard times. Whatever it is---her getting older, her now being essentially an only child as her brothers are both away at college, the right combination of medication, a stable school situations, our changes in attitude and strategies---life with Janey is much smoother than it was a few years ago.

That's why it seems strange to me that more than I have in years, I have been thinking about tough questions.  Why is Janey autistic?  Why, unlike so many kids with autism, has she made so little progress with speech and academics?  Why is it so hard to get help with her?  I guess when we are not in crisis mode, but also not being blinded by exciting new things Janey is doing, there is time to sit back and think, and sometimes the thinking is hard.

I never used to dwell much on why Janey is autistic. A lot of that is because there is no shortage of potential reasons.  Pretty much every time a new idea comes out as to what causes autism, it is something that applies to Janey.  I had a terrible pregnancy with her, with a severe allergic drug reaction at 12 weeks.  Tony was, at age 42 at the time of her conception, an older father.  Genetics can't be ruled out, and auto-immune disease run rampart through both sides of the family.  We live near a busy street, and pollution certainly could be a factor.  I could go on and on.  But still, I wonder. Was there something I could have done differently?

As for why Janey has progressed so little, that's harder to say.  And more heartbreaking.  So, so many little kids that start out at the same place as Janey make so much progress.  They have the same resources and teaching Janey did, and now they can talk easily, can read, can write, can function at a hugely higher level than her.  I love Janey just the way she is, but for her, I wish she had made the leaps some kids do.  The evening out applies to her progress, too.  She talks less than she has at times, her toilet training has regressed to less than it was, she is in some ways more affected by autism than she was at 6 or 7.  I don't know why.  The same question comes up here---was there something I could have done differently?

And why, WHY, is it so hard to get help with Janey?   Why does it seem that those charged with helping children with special needs don't understand children like Janey, children whose needs are fairly extreme, and because of that, children in families that need help so badly?  As an example, over and over this holiday season I've heard about ToysRUs and Target and so on having special "quiet" shopping hours for kids with autism.  And although it probably sounds petty and mean, I think "Bah Humbug"  That is an example of the kind of help that is no help at all to someone like Janey.  She would not be quiet for a quiet shopping time.  She doesn't understand shopping for toys.  She has no desire for toys.  And most of all, taking her shopping is NOT a source of help for us.  It's more stress, not more help. What would be a million times more helpful is if the stores somehow arranged for someone to actually watch kids like Janey so Tony and I could shop.

I know there's money out there to help kids with autism.  I've talked with people working for various agencies.  But the money seems to go into a couple fairly useless areas. It goes into "awareness", or it goes into "family events".  Well, if you have a kid like Janey, you are pretty darn aware of autism.  And if you have a kid like Janey, just getting out of the house with her is tough enough.  It is really not any help to have some kind of event to go to with her unless it is catered to kids LIKE her, kids with high need autism.  And even if it is, that's not respite.  That's not a break.  It might be fun, like going to the Lego playland or the Autism Eats Out events, but it's not really help.  Quite simply, help is RESPITE.  Help is someone else taking care for Janey for a while.  It's that simple.  It's that simple to state, but it's very, very hard to find.

Having the time and energy to think about the larger autism issues is a luxury. I am very grateful things are calmer than they were with Janey, and I knock on wood to hope they stay calm.  Progress or no, respite or not, reasons  known or not, she is a remarkable, wonderful girl---my sweet precious Janey.  I am lucky to be her mother.

Tuesday, December 6, 2016

Daytime Bedwetting, Crying, Guessing...

Toilet training.  I'd say I'm an expert on the subject, having been training Janey for about 10 years now, but that's a case where the longer you've worked at it, the less of an expert you probably are.  

My dear friend Michelle and I talk on the phone quite a bit.  Her amazing daughter Lindsey is five years older than Janey, and I can't even start to tell you how wonderful it is to have someone to talk to that has blazed the trail we are taking with Janey.  She said something last week that struck me hard---that she will never say that she is done with the whole "training" process.  

I used to think that there would be an endpoint with the whole potty-training deal.  There was with the boys, and there is with most kids, but with Janey, and I would guess with others like her, there just isn't.  It's not something I talk about a huge amount, as it's not one of the more picturesque parts of autism. But it's a big part of it.  

Right now, at age 12, Janey almost always uses the toilet for bowel needs.  That is wonderful.  I won't get into what everyone with a child like Janey probably is already too familiar with, but let's just say that the times Janey came to me covered with what was not chocolate, and further investigation showed that this same issue had affected huge areas of the house....well, you know how wonderful it is that she is trained in that way.

For urine, Janey uses the toilet in some circumstances.  She wears underwear to school every day, and rarely has an accident there.  Out of the house in general, she does very well.  On our weeklong trip to Ohio, when she was in the car for long hours, there was barely an accident.  Part of this was her enjoyment at telling us she needed the bathroom, because it caused us to stop and get to see some lovely highway rest areas and fast food joints, but hey, whatever it takes.  At home, though, it's much more of a chancy thing.  I'd say she uses the potty about 50 percent of the time for urine at home.  it's the other 50 perfect that is very, very tough.

For whatever reason, Janey wets the bed most of the time she doesn't use the toilet at home.  I'm not talking during sleep here.  We put her in two pullups at night, and we probably always will.  I'm talking when she's awake.  She will go over to the bed and wet it, in the daytime.  As you can well imagine, we are not huge fans of this.  We have tried everything we can think of to discourage this behavior.  We take her to the bathroom on a very regular basis, and try to get her to go.  We do everything we can to keep her off her bed when she might need to go.  We talk to her about it, tell her social stories, beg her, and yes, at times, we have given into to despair and yelled at her about it.  This is usually when we've just taken her to the bathroom, begged her to go, and she hasn't, and then she goes directly to her bed and before we can stop her, wets it.

This week, both Tony and I gave in and got upset with Janey for the daytime bedwetting.  We are bone tired of changing sheets, washing blankets, spraying odor control things, trying desperately to keep her bed a place you'd want to sleep.  I don't like speaking to Janey sharply, but I have to say, I'd challenge a saint to not sometimes get a little annoyed after literally years of this.

Coincidence or not, Janey has been doing a fair amount of crying this week.  She cried a lot after school last night, and she woke up crying this morning.  Nothing was helping, until I said "are you upset about the bed, about peeing on the bed?"  Janey echoed "WERE YOU UPSET ABOUT THE BED!" And I had a flash of thought, thinking "this isn't worth it.  Would I rather keep dealing with the bedwetting, or would I rather have Janey tense, upset, crying, over something that for whatever reason she seems unable or unwilling to stop doing?"  The answer was clear.  I'd rather deal with the wet bed for a million years than have Janey hysterically upset, biting her arm, crying.  I don't know why she does what she does with the bed.  But I know that I can control how I react to it.  I can keep doing the positive things---taking her to the bathroom a lot, praising her for using the toilet, encouraging her.  But if she does do the daytime bedwetting, I can deal with it in a matter of fact way.  I can keep myself from getting angry.  I can just accept that for now, that is how things are.

I told Janey "I'm sorry I got upset about you peeing on the bed.  I like you to pee in the potty, but if you forget and pee on the bed, we'll clean it up.  You don't need to cry about it.  It's okay"  Janey gave me one of the looks I live for, the look of understanding and connection, the look that says I've hit on something.  And she smiled, for the first time of the day.

I wondered, after Janey went to school, if I was doing the right thing.  Then I stopped myself from the worrying.  I reminded myself, as I've learned to do, that there is no right way with Janey.  There's no book that tells how to parent her.  I'm writing her book.  I don't know how the chapter on toilet training will end.  It might never end.  But it's not the most important chapter of the book, and keeping that in mind, we'll do the best we can, both Janey and us.

Wednesday, November 30, 2016

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.