Hearing myself on a bad day

Yesterday was a Bad Day.  Not the worst day ever, but not a very good day.  I read the news too much, and worried too much, about health care and education and Mary Tyler Moore dying and all else.  I am not political, but it's hard to keep from hearing political decisions and worries and anger unless you are in a remote location with no internet, TV or radio---coincidentally, the location I've been daydreaming about somehow going to.  So long before Janey got home from school, I was not in the best of moods.

Frog and Dog from Word World, feeling like I did yesterday

Janey got off the bus yelling.  It took me a few minutes to figure out what she was yelling.  It was a line from "Word World", one of her favorite shows, over and over---"Who's going to read my book on the radio?"  She was screaming it with the intensity you would usually save for warning people of a fire or flood.  I'm sure it was not easy on the bus driver, aide and other kids on the bus.  She screamed her way in, and I guessed that possibly she wanted to see that episode, and put it on.  She watched it, with not that much screaming, but then it was over and another one came on.  Janey didn't want to see the next one.  Not at all.

Tony says that Janey's screaming often hurts his ears.  I thought this was more of a figure of speech.  Maybe I'm half deaf already, but I hadn't had my ears literally hurt by a scream---until yesterday.  Janey's scream over the wrong show coming on felt like someone was poking an ice pick into my head through my ears.  It was truly ear-piercing.

I tried, and in my mind did a good job with, starting my calming patter with Janey as she screamed.  I said things like I knew she was upset, I wanted her to feel better, the wrong show was over...things like that.  However, I also must have said "I don't like it when you scream"  I know I must have said that, because that is the phrase she started repeating.  At the top of her lungs.  For a long, long fifteen minutes or so.  I hope I didn't really sound like her echoing of me.  If I did, I sounded like, well, someone seriously unhinged.

Finally, she calmed a bit and asked for a snuggle.  I put blankets over us, as she likes, and lay next to her and we sang together a bit.  Things seemed better.  Then---the bed was soaked.

As I pulled the sheets and blankets and everything else off the bed, I must have said "I'm so tired of this"  I didn't mean to.  I meant to...I don't know what I meant to say.  I meant to say whatever it is you are supposed to say to a twelve year old autistic girl who is sometimes toilet trained and sometimes not, and who refused at least three times that afternoon to try to use the toilet.  I don't know exactly what that right thing to say is.  I don't know if anyone does.  But she heard me.  She heard me and started repeating, again in scream mode "I'M SO TIRED OF THIS!"  For half an hour.

When Tony got home, I was pretty much reduced to a quivering, ranting mess.  Often upon his entrance after work, I say "Thanks for coming home".  I mean it.  I know there are men, and women, who would, after the years of coming home to a spouse who is acting like I was acting, would say "to heck with it" and just stop coming home.  Tony is not that man.  I am very lucky.  He took over with Janey and I sat for hours watching dumb shows on TV and trying to empty my mind.

Janey slept well last night, and woke up in what seemed to be a good mood.  I hope school is okay.  Reports are she's been having a tough time there lately too.  Yesterday her teacher said she was singing loudly in the morning, and I could picture it quite well.  I honestly don't know how the other kids in the room can work at all when Janey gets loud.

I don't know how to conclude this.  I wish I could say I'll try not to say things that aren't positive to Janey, that her repeating of them shows she hears negative messages from me.  But honestly, I don't know if I can be that perfect.  I don't know if anyone could, anyone on earth.  Most of the time, I can truly say I do the best I can, and I'll keep doing that, but some days, it's a lot harder than others, and I am sure that goes for Janey too.  Thanks for listening, my friends.

When asking politely doesn't work...

Janey woke up in the middle of the night a few nights ago.  It's been happening a little bit more lately, although still not at all as often as it used to.  This awakening, she was quite cheerful, but not at all tired.  Tony and I took turns staying up with her, as we usually do.  When my turn came, I tried to get her back to sleep by putting a whole bunch of blankets over her, which sometimes works.  This time, though, it just made her laugh and laugh.  And then she said "Pillow?"  I was a little surprised, as she isn't big on pillows, but I gathered up some and gave them to her.  She just kept repeating "pillow?" until finally, either she or I or both fell asleep.

The next morning, the first thing she said again was "Pillow?"  And because it was morning, I was awake enough to realize what she meant.  She was looking not for any generic pillow, but for Special Pillow.  

Special Pillow

Special Pillow is actually a pillowcase, put on any pillow.  It's the pillowcase she was given in the hospital when she had the burst appendix.  She became hugely attached to it there.  It didn't leave her side for weeks.  When we came home, she remained attached.  She never sleeps without it.  I wash it when I can, but if I want to make sure she sleeps, it better be around at bedtime.  It's the first and only object she's ever really been attached to.

It's a sign of how sleepy I was in the night that I didn't figure out what the problem was.  Special Pillowcase had fallen off the pillow it was on, and was lost among the blankets.  In the morning, when I finally wised up, I found it quickly, and Janey grabbed it for a big hug.

I've been thinking a lot about this whole incident the last few days.  The unusual part of it was how Janey didn't get a bit upset.  She just asked, repeatedly but without urgency, for the pillow.  It was her mild tone and lack of insistence, I think, that caused her not to break through my tired haze and figure out what she wanted.  

We often tell Janey just to ask for what she wants, not to scream or cry or throw a fit.  We tell her that she doesn't need to yell to get what she wants.  However, maybe she does.  When you don't have a lot of words to use, maybe tone of voice and volume and body language are necessary to get your point across.  Because she asked exactly how we ask her to, in a calm way, I didn't figure out what she meant.

I'm not sure what to make of this revelation. I think the big message for me needs to be to listen very well to her quiet and calm words (although I can't make any middle of the night promises).  Another thought, though, is that I want to try to be more understanding when she does scream.  Most children would have been able to say "I can't find my special pillow, and I can't sleep without it.  Will you help me find it?"  With Janey's mostly single word way of talking, I need to work hard to figure out what she means.  And I need to mentally translate screams into "This is urgent!  Pay attention to me right now!"

I'm not sure why Janey didn't scream about the pillow, but my guess is her desire for it was a lot like a lot of her OCD type arranging.  Often, before watching a video or eating or doing other enjoyable things, Janey arranges her surroundings.  She will turn off my computer monitor, move any laundry baskets to a different location, turn lights on or off, put the remotes on the table at straight angles, empty any half-full mugs of coffee into the sink (and then put the mugs back where they were, not in the sink!) and, depending on the day and her mood, a variety of other rituals.  She never gets upset doing these things.  She treats them like a job that has to be done---she does them in a businesslike and efficient way.  I think the pillow being with her feels like the monitor needing to be off---something to be checked off on a list.  Unlike with my OCD and I think most people's OCD, she doesn't seem to feel upset about needing to perform the rituals. So the pillow not being in place was more just something she needed to note and fix, not something terribly upsetting.

It's amazing to me sometimes how complex Janey can be.  I re-learn every day how much is going on in her mind, how much she can tell me if I learn how to listen.  I'll keep trying, Janey!  Thanks for being patient with me, sometimes!

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.

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.

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.