Thursday, November 26, 2015

Thanksgiving 2015

Last year, Janey spent Thanksgiving at Bradley Hospital, hospitalized for her increasingly agitated and aggressive behavior.  This year, she was home.  That alone was something to feel very thankful for.

There's a lot else to feel thankful for, of course.  There's my husband and sons, three amazing, brilliant, kind and interesting people.  There is Janey herself, my beautiful, fascinating daughter.  There's my extended family.  There's my friends, including all of you.  There's the fact that we have enough to eat, and a roof over our heads, and don't go to bed at night in fear.  That puts us far up on the things to be thankful for scale compared to so many in the world.  There's the many other things that make life worthwhile, for me anyway---books, cats, Scrabble, music, coffee---all of life's little pleasures that really aren't that little in terms of the pleasure they bring.  And there's just the fact we are all here, seeing another Thanksgiving Day.

It wasn't an easy day, really.  The thing about autism is that it never, ever takes a holiday or vacation.  It is with Janey always.  I wish so much she could have a day off from it now and then (and that we could, too)  The 2015 version of Janey has a hair-trigger.  She gets instantly, overwhelmingly upset over things she doesn't like, and there's a long list of things she doesn't like.  The anger, though, doesn't last a long time.  Within five or so minutes, she is usually not screaming.  But the screams are a daily, or pretty much really an hourly, occurrence.  They make it very hard to relax, ever.  We had our big meal upstairs with my brother-in-law.  The food was good, the conversation was good, but Janey was unhappy.  She screamed and flung clothes around and was generally extremely unhappy.  We were determined to eat anyway, together, something that I must admit doesn't get done a lot with our family.  But as soon as we finished, before dessert, I took her downstairs.  There is only so much that we can make her endure, and, honestly, endure ourselves.

Autism is our reality.  It's a huge, huge, huge part of our lives.  And I am not thankful for that.  As I think I've said before, I am hugely thankful for PEOPLE with autism, such as Janey.  But I am not thankful for Janey's autism.  I very much understand it when other people ARE thankful for their autism, or their children's autism.  But Janey's particular breed of autism takes away far, far, far more from her life than it gives her.  She is so unhappy so often.  She is hurting, and not just mentally---she bites her arm constantly, and not lightly.  She is unable to participate in so much of life.  It would be cruel for me to say I'm thankful for what autism has brought into our lives---the devoted teachers, the wonderful friends, the fascinating glimpses into Janey's unusual mind.  I AM thankful for all those things, but it's like saying "It's okay that Janey has to suffer so much, because it has brought us some very good things"  

So I will say to all of you reading this---you are a remarkable bunch of people.  I'm glad I know you.  But I wish we could have met under different circumstances.  

Happy Thanksgiving.

Monday, November 23, 2015

Janey's Mysterious Mind

If I had one wish, I would put aside the regular wishes like a billion dollars or unlimited more wishes (well, maybe not that one!) and wish to be able to be inside Janey's mind for just one day.  If I could see how her mind really worked, what the set-up is in there, what she understands and what she doesn't, I think I could be a better parent to her.

I have a few examples from recent days of my glimpses into Janey's thinking and abilities.  They are interesting, but like blurred photos or an book with some pages missing, they give me only a hint of what is whirling up there in her mind.

One of the things I'd most like to see is how she arranges memories.  I have a feeling they are like YouTube clips, little stored segments that come up when the right keyword is entered in.  The other day, I put a Kermit the Frog top on Janey.  I said "Look at this shirt!  There's a picture of Kermit the...." waiting to see if she would finish the phrase.  She didn't at first, and I let it go, but a minute later, she said "Kermit the Frog!" Then she started reciting, word for word, a skit from Sesame Street, something on a video I'm quite sure she hasn't seen in years, as we lost it, where the Count gets a job as an elevator operator and Kermit gets on the elevator.  She knew all the lines, as she usually does.  I picture her brain getting the Kermit keyword and bringing up the clip, stored in complete form.  It's an interesting form of memory, but it doesn't allow for easy answering of questions.  She knows who Kermit is, but unless I'd known why she was talking about the Count, I wouldn't have gotten what she was saying.

Other times, Janey uses the clips to try to communicate.  This evening, she took a shower and I was drying her as she got out.  As it wasn't a washing hair shower (she just likes to take showers a lot, and sometimes I let her just take one to enjoy the warm water), her hair wasn't really wet, and I wasn't drying it.  That wasn't the usual routine, and Janey had the look of wanting to tell me something.  Suddenly, she said "Yeah, Sister!" and then started singing "I'm gonna wash that man right out of my hair!"  She likes that song, and she's seen the clip from South Pacific, where the star dries her hair with a towel.  She was telling me that I needed to dry her hair.  I pictured her doing something like a Google Image search, finding someone doing what she wanted doing, and then using her memory to try to give me that image.  It's complex and interesting, but it's not practical in a lot of situations.

Although long periods can go by without Janey showing her hand, I do think somewhere in her mind, in some conditions, she can read.  This morning, Tony put on The Pink Panther on YouTube for her when she asked for it.  We've often noticed that when we aren't looking, suddenly the computer is on something totally different than what we put it on.  We assume usually she is clicking on the little suggested videos that come up next to the video she is watching, but sometimes, that seems unlikely.  Today, I was watching her when she didn't realize I was, and I saw something surprising.  She closed YouTube, then reopened the browser and went to the bookmarks (she could have done this right from YouTube, but she is very tidy on the internet and often just goes around the house closing computer windows)  The list of bookmarks was quite long, and she scrolled down it and found what I believe she was looking for, Weird Al's "White and Nerdy"  She clicked on it and happily watched it, then was able to click on some other Weird Al stuff that came up on the sides.  I don't know how she could tell that particular bookmark was what it was without reading it.  When she saw I was watching her, she gave me a look that was a little sheepish.  I said "You can read, can't you?"  Of course, no answer.

I was thinking this all through today, and feeling a little frustrated.  Why can't Janey put her amazing memory and her hidden abilities to use?  Then it occurred to me---she does.  She doesn't do so in the way we might want, but she does.  She enjoyed remembering the Kermit video, she managed to tell me what she wanted me to do with her hair, she got to watch the Weird Al video she wanted.  When I push for more, the times I have, she either simply acts like she doesn't know what I am talking about or she gets actively upset.  So---do I accept she's doing what she wants to do?  Or do I call her bluff and try to make her use her abilities to be more like the rest of us?  I don't know the answer to that.

Thursday, November 19, 2015

What Do You Do With The Mad That You Feel?

I loved Mister Rogers.  In fact, I loved him so much that (and I don't think he'll mind me telling you this) I named my son Frederick in his honor.  I wrote to Mister Rogers about this, and got back a wonderful letter and signed picture.  They are one of our family's most prized possessions, and they will of course be Freddy's some day.  So today, I wasn't surprised when one of Mister Rogers' songs came into my mind when thinking about my tough morning with Janey.  Here's a link to it (link)

The question in the title of the song is what I've been asking myself about Janey.  What CAN she do about the mad that she feels when she feels so mad she can bite?

This morning, Janey was resistant to getting dressed.  I think it was because she had to go to the bathroom, but didn't tell me.  Once her clothes were on, she wet them, and so needed a new set of clothes.  Her bus comes very early, about 6:20 am.  It was about 6:15 then, and I had to hustle to get her new outfit on.  She was playing with her iPad.  I told her to put it down and I would dress her.  She ignored me.  I asked her again, and again, was ignored.  So I took it away and told her to stand up to get dressed.  She was furious.  And, in an instant, lunged at me, trying to bite me and succeeding in pulling my hair very hard.

I was thinking about the whole incident a lot today.  Up until the lunging, and aside from the clothes getting wet, it was not unlike many mornings with my boys when they were young.  Morning often involve struggling to get kids ready, kids getting involved in something else at the wrong time, kids ignoring their parents, parents having to take away whatever is occupying the kid, the kid getting annoyed and angry.

That's where I think it gets tough for Janey.  What DOES she do with the mad that she feels?  She doesn't have the verbal skills to tell me how she feels.  She doesn't have the self-control to just simmer internally.  She doesn't have the understanding of time to realize that yes, we needed to hurry.  She saw it simply as me taking something she wanted to have, and she was angry.  Very angry, as she doesn't normally lash out like that, and hasn't for a good long time.  But as the song said, she was so mad she could bite.  And what COULD she do with that?

That's what I need to figure out.  That's what I need to help her with. And I honestly don't know what the answer is.  I always explain why I'm doing things, and although I don't remember my exact words, I'm sure I said something like "Janey, you need to put that down.  We need to get dressed for school.  The bus will be here soon"  And she DOES have the understanding of phrases like that.  She can follow rather complex directions, and I am quite sure she understands enough to know what I was saying.  But so do typical kids, and still, they don't always do what they are told.  Of course they don't.  And of course she's not always going to.  I wouldn't want her to be a robot, immediately following orders.

If it had been the boys in that situation at that age, I can well picture what they'd say, something like "I KNOW I have to get ready!  I'm going to be ready in time!  Just let me finish watching this one thing!  It's very important to me!"  And I can picture my answer back "You can watch it after school.  There just isn't time right now" If they were mad, they would let me know, and if I were annoyed, I would let them know.  But with Janey, that level of dialogue is not something she can do.

I don't like to write about Janey being aggressive.  I hate to write about it.  But I am, because I've been told by so many people that they are dealing with the same issues, and many of them have said it helps to know they aren't the only ones.  And I like to live in reality.  I would like to only write about the wonderful parts of Janey, or the progress we are making.  But the fact is, raising ANY kids involves some conflict, some anger, some tough moments.  If we pretend that isn't the case with our kids with autism, well---it's not reality.

I need to work on how to help Janey with anger.  I don't wish away her anger.  It's a normal part of her.  As Mister Rogers says, I will say to Janey (and William and Freddy)---"I love
you just the way you are"  And I will do all I can to help you find your way in this world, and to figure out what to do with the mad that you feel.

Wednesday, November 18, 2015

Kind People

I am not sure why it is, but lately, I have found people are being extremely kind to Janey, and to us when we are with her.  It's not that people were ever usually mean, but this is a new level of kind, a heartwarming going out of their way type of kind.  It might be that people are more aware overall of autism, and so know what is going on with Janey.  It also might be that as she gets close to an adult size and height, it's completely obvious she has fairly severe special needs.  People who might have in the past thought she was just a kid acting out or being silly now can see very quickly that's not the case.  Whatever it is, I'm glad of it, and last night was a wonderful example of what I've been seeing.

We had to take Janey for a special x-ray to see if she has scoliosis.  She has a little bend at the shoulders, and has for a while.  I hope very much she doesn't have it, and it's just something from growing fast and from having abdominal surgery, but we need to have it checked out.  We had put off getting the x-ray for a while, because Janey has developed a huge fear of medical facilities.  After her tough (but good) checkup recently, we had to go back to the same building to pick up new glasses for me, and Janey, as soon as she saw where we were, started screaming hysterically.  We had to reassure her she didn't even  have to get out of the car, but she didn't totally relax until we were long gone form the place.

Last night we were at a different clinic, but Janey knew it was a medical place.  She was very, very upset.  In the waiting area for x-rays, there was just one other mother and child, but the wait was very long.  We had been there half an hour without seeing anyone come out to get people.  Janey had been screaming almost the whole time, lashing out, trying to grab my soda and throw it around, asking over and over and over to go for a ride in the car---it was very tough.  Finally, the technician came out, and I saw why it was taking so long.  I am not exaggerating when I say he looked to be about 95 years old.  I've never seen an older looking person still working.  I am glad he can still work, and I bet he's good at what he does, but he was VERY slow.  It took him a long time just to walk out into the waiting area.  I was dreading how long it would take him to help the mother and son there before us.

Then, the mother did something incredibly nice.  She went up to him and said "Please take that girl named Jane in first.  We can wait"  I almost instantly started crying, from the sheer kindness and thoughtfulness of her gesture.  I thanked her over and over.  She shrugged it off, as I have noticed most truly kind people do, and said she had taught kids with special needs and understood what it was like.

It took the technician about half an hour to do the one x-ray Janey needed, which thankfully, she stood still for, so it didn't need to be redone.  As we went back out to the lobby, I asked Janey to say thank you to the kind mother, and she did.  We thanked her once again and left feeling positive after an experience that could have otherwise been a nightmare.

I hope very much Janey doesn't have scoliosis.  It will be very tough if she does.  But like so many things, it will be made easier by the kindness of others.  The world is full of good people---many more good people than less good ones.  And I am very grateful to them all.

Monday, November 16, 2015

The divide

The anniversary weekend of Janey's breakdown last year was overall good---compared to a year ago, it was wonderful.  Most of the time, Janey was cheerful, and when she wasn't, we were able to find ways to make her happy again, pretty much.  However, because that's just how I am, I guess, I'm feeling kind of discouraged today.

A few incidents this weekend are what's on my mind.  Together, they illustrate the difficulties Janey has in learning and we have in knowing how to help her learn.

The first was a "diaper incident" of the worst kind.  I won't get into the details, but you can imagine.  It required an emergency shower, lots of laundry and an hour of floor cleaning.  It was the worst one in years, and it was depressing.

Janey knows how to use the toilet.  And she does use the toilet, when she feels like it.  She can sometimes go for a couple days and use it almost all the time.  But when she doesn't feel like using it, she doesn't.  And there seems to be no earthy way to convince her that she needs to use it ALL the time.  I read a book once about toileting training kids on the autistic spectrum, and I get annoyed every time I think of it.  The main thrust of it was to find what truly motivates your child, and then use the heck out of it to lure them to use the toilet.  Nothing motivates Janey that much.  And I honestly think sometimes she just isn't aware enough of her own body to use the toilet.  If she didn't let on that her appendix had burst, how is she expected to always know she needs to use the bathroom?  That where the divide is---the divide between what we want and reality, the divide created by lack of motivation and lack of understanding.

The other incident, while seemingly small, has been bothering me a lot.  Janey wanted to go for a ride in the car.  We had taken her already that day for two rides in the car, long ones.  It was evening, we were tired, the Patriots were on, there just wasn't going to be another car ride that night.  We told Janey that, but she kept trying.  And trying in non-screaming ways.  I think she felt somehow there was a key that would unlock the ride, something we weren't telling her but that she was determined to figure out.  First, she tried to dress herself.  She often does this, and leaves out major pieces, like all the clothes besides shoes.  When we still said no, she went and found a scarf, a scarf she hasn't worn since last winter.  She presented it to us, saying "This is your scarf!" and seeming to think maybe THAT was what we'd been looking for.

When we still weren't taking her, Janey came over and pointed to herself, and said "MY NAME IS JANE" in a very rehearsed way.  Then she said "Go for a car ride!" with confidence that she'd get the ride, finally.  I am quite sure she was demonstrating a skill that is something worked on in ABA therapy.  She had decided we were looking for her to work for the ride, as at school they have her work for rewards.

Somehow, it's a lot harder for me to see Janey trying very hard to figure out what we want than it is to just have her screaming. It's the divide again.  There is not a way I have found to explain to Janey why she can't do or have something she wants when she wants it.  I am saying to myself here "well, tough.  That's a lesson we all have to learn.  Sometimes the answer is just no"  But if you never, ever understand WHY the answer is no, the world must seem like an arbitrary and confusing place.

So much of what we try to do as parents is based on helping kids to understand the world---why we use a toilet, why we don't go for twenty car rides a day.  But with Janey, her cognitive issues leave many things impossible to explain.  Of course I explain anyway, with the meme of "assuming competence" in my mind.  But she doesn't understand much of it. I can't fix that.  She can't fix that.  We keep trying, but there are some walls, some divides, we aren't going to cross.

Friday, November 13, 2015

A Year Later

I didn't sleep well last night.  I kept waking up and having flashback type memories.  I've always heard the anniversaries of events can bring them back vividly, and I guess it's true.  It was a year ago tomorrow that Janey was taken to the emergency room from her school by ambulance, the Friday of Veteran's Day week---like today.  She was in a state of agitation such that she was biting, lashing out, screaming non-stop, taking off her clothes, flinging things around---it was a nightmare.  She stayed 6 days at Children's Hospital as a boarder, waiting for a place at a psychiatric hospital, and then 19 days at Bradley Hospital in Rhode Island (as most of you already know).

Of all the memories of that horrible time, the most vivid one, the one that kept coming back last night, took place the morning after the first night in the ER.  Janey had slept very little.  She had no clean clothes---Tony had gone home to get some and hopefully get a little bit of sleep.  I asked if there were any scrubs or anything she could wear---thinking a children's ER sure might have something.  They gave me, to go with the hospital top, a pair of pants that were about a child's size 2 and a Depends style pullup that would have fit a men's XXL.  Janey wouldn't keep them on.  We were in a tiny room, split in half by a pull-down metal wall that covered all the "medical" parts of the room, so we had only a cot on a bare, dirty floor---absolutely no room to move.  We were required to leave the door open, so an eye could be kept on Janey.  We were right by a busy desk.  Janey wanted out.  She kept taking off the ill-fitting clothes and trying to run down the hall.  As I tried to stop her, she bit me on the hand, very hard.  Then she grabbed some chocolate milk and flung it around the room, and tried to break the tray it was on.

The room was suddenly filled with people---probably 10 people, including two cops.  A nurse pulled me into the hall and told me I had to go elsewhere, that I was the focus of Janey's anger and I needed to not get hurt more.  I was taken to a small meeting-type room.  Another nurse brought me some ice for my hand, and some tea and toast.  I sat there, stunned.  It felt impossible that this all was actually happening.  A few minutes later, a third nurse came in and asked me "How does Jane usually react to Haldol?"  Haldol?  Wasn't that what they give violent criminals on TV shows to sedate them?  Why would Janey have ever had Haldol?  I said blankly she had never had Haldol.  The nurse looked skeptical and left.  And I sat there, feeling that my life had changed into something I didn't recognize.

That sequence, that scene, is what kept me awake.  It still seems unbelievable, like something that could not possibly have happened.  But it did.

I could write for hours about the past year, a year in which we spent far too much time in hospitals.  I have a lot brewing in my head about the difference between treatment in different hospitals, and treatment when you are there for a psychiatric reason and for a medical reason.  But I will save that, and say only two more things.

One is that a year later, Janey is doing well.  We are in probably the longest stretch even without any tough times that have lasted more than a day.  I think the changes are due to both a change in medications and a change in our parenting.  Whatever it is, it's good.  However, we know all too well now that things can change suddenly, and we don't take the good for granted, not for a second.

The other is that while I had my dark night last night, what kept the memories from overwhelming me was remembering the support I got from friends at that horrible time---friends in person and friends from around the world I know from this blog.  You all were incredible.  Your love and support and generosity---I cannot possibly say how much they meant to me.

Here's a picture of my big girl, wearing a jacket I bought for her brother that he didn't like but she loves for some reason.  My love for this amazing girl keeps me going---with a little help from my friends.

Monday, November 9, 2015

In an alternative timeline

I read a lot of books about time travel and alternative timelines and parallel universes and the like.  I don't really believe in any of them, but thinking about them fascinates me and often makes for some very good reading.  Usually, though, I don't put such thoughts to use on my own life, or Janey's life.  This weekend, I did.

I saw several pictures on Facebook on Saturday morning of kids preparing to take the Boston exam school test.  They were kids that started kindergarten with Janey, and it hit me that if Janey had stayed in their grade, if Janey had developed typically, she would have been taking the test on Saturday.  The test determines if you get into one of Boston's exam schools.  Janey's brother Freddy went to Boston Latin School, as did my husband Tony (William also got in, but chose not to go).  Freddy and Tony had a great experience with the school.  It's a special place---the oldest school in America (founded in 1635!)  And it's so far removed from any educational route Janey is taking that it might as well be on the moon.

I let myself spend a few minutes, after seeing those pictures (which were great to see, and I am truly happy and excited to think of kids I know Janey's age going to Latin), what it would be like if Janey were "normal".  More specifically, what would this past weekend have looked like?  Well, we would be nervous about the test.  We'd have taken her there early, to stand in line.  She would have had to go in herself, as the boys did, and we would have gone home and thought about her.  After the test, we would have talked about it, and maybe gone out to lunch.  Then, we would have done what we did in the regular timeline---picked up both Freddy and William at the train station, both of them visiting from college for a bit.  She would have listened to their college stories, and told them her own exam stories.

As I write this, I am crying.  Usually, I don't mourn the Janey that could have been.  It's a useless thing to do.  That Janey doesn't exist.  I love the Janey I do have.  But somehow, I got a vision of that Janey, what she would look like, talk like, be like.  And it made me heartbroken, for a few minutes, thinking about all she is missing.  She is missing so much of life.  She won't just not go to Latin.  She won't go to college.  She won't get married.  She won't have children.  Her life is not going to have the milestones, the joys, that so many people can take for granted.  And I usually would pipe in here, reminding myself and others that she also won't have some of the heartbreaks life brings, but I don't feel like it, right now.  Those heartbreaks are worth it, for the great joys that the things she will miss can bring.

And why?  That's another thing I don't usually dwell on.  But why is Janey autistic, and severely developmentally delayed?  What happened?  I have no shortage of possible reasons, but that doesn't really help.  Why doesn't she progress in the way that most kids with autism seem to progress?  Why, even in her autism program, does she seem so far behind?  What have I done wrong?  I know the answer is that it's not me, but of course, I ask that anyway, in private.  And I guess here, in public.

Most of the time, I can rejoice in the Janey I do have.  But sometimes, I feel life has been very unfair to her.  Not to me.  To her.  I wish I could say "But she doesn't know any differently!  She's happy as she is!"  But she isn't happy, much of the time.  She's not happy at all so often.  She suffers, emotionally and sometimes physically.  She might not know specifically what she is missing out on, but I think she does see that life is more frustrating to her than it is for many others.

And now I will bury these thoughts again for a while.  There are some things you can't think about very often.