Friday, April 21, 2017

On admitting it's ME who is overwhelmed and frustrated...

We are at Friday of spring vacation week.  Tony is taking today off, which is a huge, huge, HUGE relief.  It's been a long week.  Mostly for me, more than Janey, and that is what I'm thinking about.

Last summer when I talked about how Janey's life had little variety, I was very taken with the insight a lot of you gave me---that Janey might not mind the lack of variety, and in fact might like it.  I think you were right.  Janey takes enjoyment in simple things, and she loves having her days follow a pretty predictable script.  She is able to handle changes more than some kids with autism, but she likes it if the changes are within the framework of a general sameness.  With that in mine, I decided this week I would follow Janey's lead, let her set a routine and go with it.

Janey set a routine the first day and without me reminding her or prompting her, she requested it be followed for the next three days.  This is how it went....First, she woke up about six.  I snuggled with her a bit, we had some breakfast, she watched a little bit of TV.  Then she said "Go to the ice cream store?", which, as you've probably heard, is the convenience store near us.  We did the routine of getting dressed for the day, and walked to the store.  Janey loves this.  I got coffee and she looked for a long time at the chips and picked a bag, we payed and walked home.  Then she ate the chips outside while I had my coffee.  

Next, we went back inside for a little more videos time.  Then, Janey asked for a shower.  I set it up and she had one---washing her hair or not depending on if she needed it.  I let her take as long a shower as she felt like.  We got dressed again, a little more videos and then Janey asked for a car ride.  I suggested a place, which didn't really matter, as she wanted simply to be in the car.  We drove, got out wherever I had said, Janey put up with wherever we were for about five minutes, then asked to go home.  

The huge hug when Daddy gets home
When we got home, Janey screamed because the car ride was over.  That's where the routine still was routine, but not a very fun one.  For the rest of the day, until Tony came home early about 2 (he went into work very early so he could come home early), the routine was to scream and ask for Daddy.  As early as I could do it without it being too long, we went outside to wait for Daddy.  When he got home, Janey acted like she was seeing a returning soldier after many long years.  The smiles and hugs were incredible.  Then they went for the kind of car ride she really likes, long and without destination.

By last night, I was in a mood and a half, and I realized something.  As much as I want to be the perfect autism mother, as much as I feel like my own wants shouldn't matter, they do.  And I was bored, frustrated, hurt, tired.  

The ride yesterday was the last straw.  For the ride, I said we could go to Panda Express.  None of us but Janey like this fast food Chinese food, but she loves it.  However, I didn't realize that she had a routine in mind.  There was a line when we got there, as it was lunchtime.  I don't think Janey had ever experienced a line there before (it's not the most popular place, and is right next to a Five Guys and a Chipotle that get most of the customers) and she started freaking out and pushing people.  I got her to wait, we got our food, we sat down and she quickly ate the beef dish she likes, in about three minutes, and she was ready to go.  I had barely had a bite.  She grabbed the tray and wanted to throw it out.  She was rapidly becoming frantic and hysterical.  I gulped down a few bites on the way to the trash and threw out the rest, as the few other customers stared.

Then, Janey wanted to go in the Chipotle.  I realized that probably every other time she'd gone to Panda Express, it was because the boys wanted Chipotle, and Tony took her to Panda Express instead.  Then, they came over to see us at the Chipotle.  The fact that the boys are away at college and Tony was at work didn't matter.  We were supposed to go in the Chipotle and see them.  I got her into the car, screaming and highly upset, and she spent the rest of the afternoon highly angry.

When Tony got home, I started ranting.  I had done everything I could for four days to make it a week that would work for Janey.  Although I fully understand that she has a need for routine, although I know as well as anyone can that she is easily triggered by changes, I was just tired of it.  I was tired of trying so hard to keep her happy.  I was tired of dealing day and night with screaming.  I was tired of....well, all of it.  

And that's the thing of it.  All of us autism mothers and fathers are human beings.  We do our solid best.  But sometimes, it gets to us.  And that is where it gets hard.  Because what do I do?  There is no break from this.  There is no end to it.  There is no day that Janey's needs won't be overwhelming.  This is my life.

Last week I talked about the lack of programs or activities for those like Janey, with high needs autism.  The truth is, Janey doesn't much want outside activities, I don't think.  I do.  I want the break they would give me.  But the few activities that do exist---classes and therapies and so on---require I be there with her.  And that is just harder than no activity at all, and not worth it for something that in my heart I know she doesn't really enjoy anyway.  It's me that needs variety, and a break, not Janey.  

I got over my rant last night.  I am lucky in so many ways, and one of the top pieces of luck is one heck of a wonderful husband, who is taking over with Janey today.  But I keep being struck by that one thought---parents of kids like Janey are people too.  Sometimes it seems like we are supposed to not be. But we are, and sometimes, we are overwhelmed.

Wednesday, April 12, 2017

Baby Bubbles

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

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

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

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

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

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

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

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

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

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

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

Friday, April 7, 2017

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

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

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

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

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

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

Saturday, April 1, 2017

At the Autism Whatever time of year, challenges, hopes, dreams and love

Over the years, writing this blog, my goals have been a few things.  One is to be honest---to write about how I really feel and how my life with Janey really is---to try my hardest to stay clear of any particular philosophy or approach that will limit how I feel I can express myself.  Another is to be respectful of Janey, to do my level best to represent her in a way she would want to be represent herself, if she were able to write.  And third, to give support and encouragement to others---to let them know that it's possible for things to get better even when they seem impossibly hard, to give them a virtual hand to hold when times are tough and to celebrate along with them when our girls surprise and delight us with their triumphs.

It's that time of year again---the time that goes by various names---Autism Awareness or Acceptance or no name at all because it shouldn't be a day, it should be all the time, or whatever.  It always makes me think I should write some kind of summing up post, some kind of meaningful conclusion post.  I had some things in mind, but today turned out to be a tough day.  Janey is not happy.  There's a lot of screaming, a lot of crying.  I am feeling discouraged, and that always makes it hard to stay positive...it makes it feel very fake to stay positive and upbeat, at least in the short run.

Where are we today? Overall, in a fairly good place, despite today's mood.  We had Janey's three year re-evaluation IEP meeting on Wednesday, and it was a good one.  She is making progress in ways she hadn't been for a long time---with talking, with learning skills, with expressing her needs.  Tony and I were very happy, as we almost always are, with the level of caring and understanding those working with Janey showed.  It's an example of this that one area she'd regressed a little in was "attention seeking", and her teacher remarked that is probably because she is almost always getting attention without having to seek it---that she knows more people in the school than most the teachers, and they all want to interact with her---that she draws people in.  That made me very happy, and it's something Janey really does do.  She's got an engaging personality, and we are seeing more and more of who she is as she gets older.

The biggest challenge I see for the next three years, if we look at Janey's life in three year blocks, is providing her with an interesting life.  At one point today, while crying, Janey said "I'm so bored!"  We've never heard that before, and I think it was a quote, but as so many of her quotes, it was used in context.  I asked her "Do you wish it was a school day?" and she said "WISH IT WAS A SCHOOL DAY!" very firmly.  Sometimes it can make me cry to think how limited Janey's life is.  She is nearing thirteen.  When I was thirteen, I started high school.  I had friends and crushes and homework and activities and hobbies.  I worked, babysitting and helping in my mother's store.  I wrote letters and diaries and read hundreds of books.  I walked for hours on the shore.  What does Janey do?  She goes to school and she comes home.  She watches videos.  She eats.  I need to expand her life.  We need to find activities for her, not busywork but activities she will really enjoy and be able to participate in.

Longer term, we need to start thinking about what Janey's life will look like as she becomes an adult.  How do you plan a life for someone like Janey?  At the IEP meeting, it was mentioned that sorting things was good training for sheltered workshop type work.  I have to say---that's not a goal of mine.  If you measure Janey's intelligence with any standard method, I know it would look like it should be a goal, even probably a rather ambitious goal.  But I don't think you can measure Janey with standard measuring tools.

I used to believe that people who said things like "There are many kinds of intelligence" and "IQ is just a meaningless number" were, well, I don't know...not correct.  But my thinking on that has changed radically.  Janey is very, very smart, in ways those tests can't measure.  She is smart in her own ways.  I can honestly say she has intelligence that can't be measured with tests.  She shows it with the song connections she makes, with the quotes that perfectly match situations, with her sense of humor, with her dancing and organizing and sophisticated palate.  I don't look at her, ever, and see a person with limited intelligence.

So---what do I hope for Janey?  I hope she has joy.  I hope she finds a way to pursue her interests and use her talents.  I hope she is able to find the care that she needs for the areas that she needs help with.  I hope she is always surrounded by people who love her and find her interesting.  I hope that she can rid herself of some of her demons, of whatever it is that makes her so unhappy often.  I hope she never encounters cruelty.

And what do I hope for myself?  I am realizing that's fair to ask, also.  I hope I can balance Janey's needs with my own.  I hope I value myself enough to do what I need to do to be healthy, for Janey and for myself.  I hope I am able to pursue my own interests and dreams without that hurting Janey.  I hope for a balanced life, one where of course my most important role is mother---to Janey and her brothers, but that I also am able to enjoy my own passions---that I can garden and read and travel and laugh with friends and have a life that is happy without that taking away from Janey's happiness.

I don't know what to call this time of year.  But whatever you choose to call it, I wish those with lives touched by autism happiness and love.

Monday, March 27, 2017

Screaming, Shopping and Sleeping (or not)

On Saturday morning when Janey woke up, Tony was working on our state tax returns. Therefore, he wasn't available for the regular Saturday morning routine.  We hadn't really been aware of how much Janey counted on that routine, but she let us know, that's for sure.

Usually, on Saturday morning, Tony makes Janey bacon.  Then he has his coffee and she "steals" it---a game they've played for years.  He says "I hope Janey doesn't steal my coffee!" and then sets it down, with a little black stirrer straw in it, and she does indeed grab it and steals it.  Then he cries, a huge exaggerated cry.  This goes on for a long time.  We've had her her own coffee (hey, she's twelve, that's pretty late for an Italian to start on a lifelong coffee addiction), but she prefers the stealing method.  She and Tony can make a full morning of coffee, bacon, and then cooking whatever else she asks for---"soup" (which is boiled greens), toast, home fries, whatever.

This Saturday, I tried to hold Janey off until Tony could finish.  I wasn't even able to get started before the screaming started.  I was determined to give Tony the time he needed---he was on a roll.  It was a hellish hour or so.  The screaming...wow.  I write so often about Janey's screaming here, but unless you have heard it, I don't think anyone can quite picture it.  It's truly ear-piercing.  I do think both Tony and I have lost some of our hearing from it. And despite many, many different methods I've tried to reduce it, nothing works consistently.  It's Janey way of saying that the situation is just plain unacceptable, and it really doesn't stop until the situation improves in her eyes.  I finally got through the time by her taking an extended shower---she screamed right up to getting in and screamed as soon as she was out.  Once Tony was done, they did their routine, and Janey was quite happy.  It's times like that that result in us usually just doing what Janey needs done.  We are all happier that way.  But we can't always, always do that.

On Sunday afternoon, after a decent enough weekend when the screaming was past, we took Janey out shopping.  That is something we almost never do, except for quick grocery shops.  She has learned to do very well in the grocery store, as long as she knows she'll soon be eating the food she picks out.  But this was a shop to A.C. Moore (a craft type store) and Five Below (a store where everything costs five dollars or below).  We weren't shopping for any real reason---we just both had the urge to browse around.  And lo and behold, it went quite well!

In the ACMoore, I walked around with Janey for a while so Tony could look around, and it was actually fun---not something I've never really found when shopping with Janey much.  She was interested in a lot of things in the store---some decorative feathers, some plastic models of animals, a wooden heart, a letter "J" to decorate----quite a few things.  I asked her a couple times if she wanted to buy things, but I don't think that's a concept she truly gets except in the grocery store.  It makes her cheap to shop with!  She sees the store as a museum of sorts---a place to look at and sometimes touch things, but not take them home.

While we walked around, I thought to myself "You know, I don't think people are staring like they usually do"  So I started taking note, and yes, they still were staring.  The thing is---I don't notice it much any more.  That's a huge change.  I used to be very bothered by staring, and now, I'm so used to it I don't even see it.  I think that goes along with a general shift in our thinking about Janey.  I'm comfortable enough with her just being who she is that I don't really much care most of the time if other people find her stare-worthy.  If I do notice them, I think I often assume (without really thinking, just letting my mind wander about) that they are thinking she is cool, because that is how I am seeing her.  Or I think "it's great she is educating them about the existence of people like her, autistic older kids and adults" (because she looks fairly close to an adult now)  Whatever it is, I'm glad it happened.  We all live in a world partly made up of our own perceptions, and I like living in the one that doesn't notice or mind the staring.

Janey wasn't too interested in the Five Below, but I bought a few things there, including some ChocoTreasures eggs.  I love Kinder Eggs, chocolate eggs with toys inside, but they are illegal in the US, so I'm happy to have discovered there are similar eggs that are now legal.  I bought a few, ad in the car on the way home I did something stupid---I opened one of them.  It was stupid because Janey and chocolate, after noon, don't mix.  She saw the chocolate right away and asked for it, and instead of saying no, I gave her a little, little piece---about the size of my thumbnail.

And then we re-learned a lesson we should have learned long ago----if Janey has chocolate after noon, she doesn't sleep.  I think it's so hard for me to grasp because it just seems not to make sense.  How could that little an amount of chocolate keep her up?  I think it's especially dark chocolate, which this was.  Usually, Janey is asleep by about seven.  Last night, although she was cheery and happy and willing to stay in her bed, she didn't get to sleep until about 11:30.  Which meant, of course, one of us had to be up too.  Tony has to work in the morning, I don't, and it was also me who gave her the chocolate, so I did most of the duty.  Janey watched her iPad and sang to herself and asked me for cheese and generally just did her thing while I lay next to her, fighting sleep until she finally drifted off.

In thinking about the weekend, a fairly normal weekend, I am struck by something.  So much of how Janey does depends on what we do---whether we follow routines, whether we let starers bother us, whether we stick to rules we've made ourselves about chocolate.  We are all happier if we make Janey's life predictable, relaxed and sleep-at-night promoting.  It's a feedback loop---the more we can do that, the happier she is, and the easier it is to enjoy her and keep her happy.  We can't always get it right, because we are human, and we aren't completely in control of all aspects of life, but we can do our best, and when we do that, instead of expecting Janey to be something she isn't, life with our girl is better for all of us.

Wednesday, March 22, 2017

The Sticker Book

Recently, after being amazed by seeing Janey be tested as part of a research study, and after some surprising, great talking she's done, several thoughts are in my mind constantly.  One is how bored she might be.  Because her talking is limited, I think we often limit what we talk to her about.  Quite frankly, it can be hard to think of conversational topics when your conversation partner rarely talks back or brings up anything new.  So I've also been thinking about ways to expand her knowledge, to give her new ideas and facts and interests.

Puffy stickers
Janey is absolutely an auditory learner.  That seems to be rarer in autism than being a visual learner.  So much of what I read as advice for teaching kids like Janey assumes they are visual learners---picture schedules, communication devices that use pictures, choice boards with pictures---all that.  Janey prefers words.  She's made this quite plain, as plain as she is able.  I am the one that needs to figure out how to help her learn in an auditory way.

So---my inspiration for making a sticker book seems strange.  What are stickers if not little pictures? But when I had the idea of the book, I had a feeling I'd hit on something.  The trick is---the stickers are for ME.  I'm the one that loves them, I'm the one that learns well visually.  I'm the one that needs new ideas for talking.

And I love stickers.  There, I've admitted it---I'm a middle aged woman who adores stickers.  I always have.  So the idea of making a huge sticker book for Janey appealed to me very much.

Some Kawaii stickers!
I got started by ordering a sketch pad and a couple lots of stickers from Amazon.  I ordered a big pack of puffy stickers---sheet after sheet of different kinds, and a pack of stickers of the kind you put on cars, all assorted.  Then on Etsy I discovered something called Kawaii stickers.  I thought at first Kawaii was a brand, but it's actually Japanese for a concept much like "cute".  There are a HUGE amount of kinds of Kawaii stickers---I've since found a few online stores that sell them very cheaply, and I don't think I could ever run out of different types.

An animal themed page
I had a lot of fun sticking all the stickers I had so far in the book.  And then I gave it a try...I showed the book to Janey, picked a page at random and then a sticker at random, and showed it to her, and talked about it.  Talked about it in the way we've come to figure out she likes best---in a silly and highly enthusiastic way.  Several of her breakthrough sentences lately have been ones asking us to play various verbal games with her---pretending to sneeze, making high squeaky "monkey" noises, things like that.  The sticker I first hit on was a ghost.  I said something like "There's a ghost!  It goes WHOOOO HOOOO in such a creepy way!  See that silly ghost?"

A little bit edgy and weird for my near teen
Janey loved it.  We played with ghost noises for quite a while.  Then I switched pages and asked her to touch the sticker she wanted to talk about.  We were in a page of Shopkins stickers, and she found a picture of corn with eyes.  I talked that up a lot "That's so silly!  Corn never has eyes!  We eat corn!  It comes in cobs.  You like corn.  Let's find some more corn pictures!"  We found some more on that page, and some on other pages, and that led to other topics---one of the corn pictures featured a rainbow, and I started talking about colors, one had corn next to some other food, holding hands, and I talked about how they were friends...things like that.  Before I knew it, half an hour had gone by---a full and fun half hour.

Camping, cooking and Frozen
Since then, I've pulled out the sticker book every day, and Janey seems to be looking forward to it.  She finds her favorite stickers quickly, but is also open to new stickers.  I feel like I've increased how interesting and varied our talking time together is by a huge amount.  And...I have an excuse to look for stickers to add!

In the broader picture, the whole sticker book idea brings up a couple lessons I've learned along the way.  One is that Janey knows if we are enjoying what we are doing and are engaged in it.  I'm going to stick to a way of teaching that I like much more than one I don't, and with Janey's extreme ability to read tones of voice, she picks up on the fact I'm having fun, and she joins in.  Another lesson goes along with that well-used phrase "You've met one kid  with autism, you've met one kid with autism" All the visual schedules and picture-based AAC programs in the world don't change the fact that Janey learns by hearing.  And that I don't, and that I need to figure out how to bridge that gap, how to respect what she is learning every day a little more how to tell us.  If that allows me to indulge in a long-buried sticker passion---well, all the better.



Sunday, March 19, 2017

"I am angry, Daddy"

A few nights ago, when Tony had just come home from work, Janey went over to him and spoke the words in the title---"I am angry, Daddy".  It's hard to describe, but I think many of you are familiar with what I'm talking about when I say those moments are sort of like miracles.  They make you feel like you are in a dream, or living another reality.  For Janey to just go over and say that, and not reverse the pronouns, and state clearly how she felt---well, it's something amazing.

When I think about it, it's also something we have worked hard on, and so has her school.  Both the school and we have worked for years on helping her identify emotions. But still...to have her suddenly say something like that, it always feels unexpected.

I used to read a lot of books about kids with autism, before I had such a child.  Call it premonition, or something.  Now I realize many of those books were selling a bill of goods, not intentionally, of course, but still, they often showed miracle type cures, or else cures that came about by parents so devoted that no-one in the real world could ever copy their methods.  And I know, now, that some kids do change radically.  I'm not saying they don't change as a result of help from those around them, but other kids can get that same help and change much less, if at all.  You aren't going to grow a sunflower from a marigold seed, even if both get the same care.  And getting a marigold is great, not bad, but if you write a book about how you grew a sunflower from a tiny seed and anyone can do that, even those with marigold seeds...you are not quite getting it.

In those books I read about autism, I would often hear of moments like the one where Janey said what she said, and I'd think "There!  They did it!  Problem solved!"  Those of us who have now lived the life now that's not how it works.  Doing something once doesn't mean it will happen again right way, if at all.  I don't expect Janey to suddenly clearly state every feeling she has.  But it's wonderful to know she CAN.

After Janey told Tony she was angry, he did one of the twisted sentences we often do.  He said "What Daddy can do to make Janey feel less angry is....", leaving the sentence open for her ending.  We do that to sort of pre-populate a sentence, so she can fill it in.  And she did.  She said "say 'Achoo, A Sneaker, A Sandal, God Bless You"  That might not sound like it makes a lot of sense, but it does.  Janey lately loves to have us pretend to sneeze, and then to say "God bless you" to us.  And Tony often pretends to sneeze by saying "a shoe, a sneaker, a sandal..."  So, we played that game for a while.

A few days before Janey's big statement, her brothers were here working on their financial aide forms, and Janey was very upset.  I took her aside to calm her down and did some guessing, saying "Janey is angry because Daddy is busy" (he was helping the boys).  Janey repeated but changed what I said, saying "Janey is angry because William is busy"  And indeed, when I let William know she needed some attention, she was much happier.  We are realizing that often what she seems angry about is when we aren't paying her enough attention.  I think we usually used to guess she was angry about more physical things, like feeling hungry or tired or in pain, and it's so wonderful to better understand what she needs from us.

We'll keep on working on feelings.  I want to thank you, Janey, for giving us that great sentence to let us know how you feel.  Whenever you are ready to tell us anything, we will be here to listen.

Friday, March 10, 2017

Talking about angry

I had a feeling yesterday afternoon would be a tough one.  Tony had a doctor's appointment after work, and so was going to be a few hours late coming home.  Janey doesn't care for that---not at all.  We've lately had some pretty good afternoons, but we do so by following a routine that is quite unchanging, right down to what I say when.  She gets off the bus, I tell her I missed her a million and was crying seven times for her.  I've said that every day for many years, and if I don't say it, she is not pleased.  Then she takes off her shoes and flings herself on her bed, and hugs Special Pillow for a bit, then asks for cheese.  I get it, cutting her slices.  She then asks for salami, and then does her own hunt to see what else there is.  I try to have a jar of salsa around, for a lower calorie treat.  She eats that, and then wants to snuggle again for a bit, then she asks for videos.  Sometimes she tells me which one she wants, something she wants me to browse.  Either way, we watch them until it's time for Daddy to get home, around 4:45.

A sign that would do no good
I told Janey early on that Daddy was going to be late.  She didn't react, but like clockwork, at 4:40 she started looking for him.  I reminded her he wasn't going to get home at his regular time.  Once it became apparent I was telling the truth, she started to scream.  And then screaming got loud, fast.  I ignored it as long as I could, but then, I asked her to stop.  She didn't, and I asked more firmly.  She didn't again, and I suggested she go in the "screaming room", a long ago strategy to try to contain her screaming to one room, the bathroom.  I went with her.

In the bathroom, after more screaming, I did what we so often do---thought up a song on the fly.  It was more of a chant, really.  It went "Janey is ANGRY because Daddy is LATE!"  I clapped on the "angry" and the "late".  Janey started repeating it near immediately, and we chanted it probably a hundred times.

How I must have sounded to Janey
Then she surprised me.  I did what I often do after she gets a sentence down.  I said the "Janey is angry because..." part and left the ending out, expecting her to say "Daddy is late".  Instead, she said "Mama said NO!"  She said the "no" in a (I hope) very overstatedly nasty voice, and while saying it, shook her finger in my face.

Well, I hope I don't sound like that when I say no, and I don't THINK I usually shake my finger in her face, but I can't say it's impossible....And I thought about it.  A little before Janey started screaming, I did say no to her.  She asked for more cheese.  We are trying to think about calories a bit more with her, and she'd already had a good deal to eat, so I said I didn't think we needed more cheese right then.  She didn't react much at the time, but I guess it stayed in her mind.  Or perhaps she was referring to when I told her not to scream, after she had started the screaming.  Either way, I made her angry and she let me know.

I've been working on getting Janey to verbalize her feelings, or on a more basic level, to recognize what she feels as angry or sad or hungry or happy or surprised, every chance I get.  I feel like the more she understands what her feeling are, the more she can tell us what she is feeling.  Yesterday felt like a bit of a breakthrough.  Maybe it wasn't the answer I wanted, but she told me that I made her angry. I am going to look at how I say "no".  There will still of course be times I have to say it, but I'll try to say it in a kinder and softer way.

After the screaming talk, the afternoon actually went well.  Janey calmed down a huge amount, and we watched videos and had a good time.  Just before Tony got home, one of her videos talked about having a cold and sneezing, and Janey started one of her favorite games lately, pretending to sneeze.  We do a lot of pretending like that---pretending to sleep, or cry, or get angry, or cough.  It seems like a way to work on feeling and symptoms and so on without actually having to get angry or sick.  I'm pleased that Janey seems to get the concept of pretending, at least in a basic way.  We pretended to sneeze back and forth for a good ten minutes, and then Daddy was home at last.  And I took full advantage and closed myself up and read for a long time.  Not a bad afternoon, overall.

Monday, March 6, 2017

When Janey got studied and blew our minds

Janey is part of a study of autism at Boston University.  They are interested in kids who are low verbal---who talk but don't talk a lot, and she fits right into that category.  We first started with them just right before all hell started breaking loose, when Janey went to Bradley Hospital and then in fairly short order had her appendix burst, so quite a while went by without us going to the study.  I called them a few months ago and got us started again, and we've been twice since then.
Dedicated parking!

BU has a great setup for the study.  They have a dedicated area, which has been designed to be very autism-friendly.  It's calm feeling, there are toys and books in the waiting area Janey actually has an interest in, they have a dedicated parking space for participants (a BIG deal in the city!) and most of all, everyone we have met working on testing or on interviewing parents seems to be absolutely wonderful at what they do.

Janey seems to love going to the study.  She's never one to have much trouble separating from us, and she goes off happily with the tester while Tony and I get interviewed about her by the head of the study.  The few times we went a few years ago, and the first time we went this go-round, the interviewing lasted as long as Janey's testing, but this last time, we finished the interview and so got an offer to go watch Janey being tested, through a one way mirror.

Well---that is where we got our minds blown.  We saw a Janey we've never, ever seen.  She seemed totally at ease, and very, very on.  She's been in a great mood lately, so that was part of her, but a lot of the credit has to go to the tester, a young woman who had the perfect mix of calm voice, persistence, encouragement and firmness.  

The testing was a mix.  Part of it was identifying pictures, and Janey whizzed through that---words I knew she knew like "cow" and "apple", but lots of action verbs, which I had no idea she really knew.  For example, a picture of a boy swimming got the response "The boy is swimming"---perfect grammar and a full sentence.  With a picture of some birds, Janey first said "bird" and then when asked how many, she actually counted them and correctly answered "four".  We looked at each other in the darkened observation room in amazement.

Some of the tasks were non-verbal things, like sorting silverware or doing little block puzzles.  Janey had no trouble at all with most of them.  Sometimes, she had to be encouraged along a bit, but she didn't get upset, she kept working and she did them!

It was interesting to us that what she consistently got wrong was what I've never had any luck at all teaching her---colors.  She honestly seems to have no clue about colors, and sometimes I wonder if she might be colorblind.  I've been told, though, that many kids with autism have a hard time with colors.  She also gets a little confused on shapes.  She called a star a diamond---sort of like she knew it was one of the more exotic shapes but couldn't bring the name to mind.

Toward the end of the session, Janey was getting a little restless, and she started singing to herself.  It took me a while to recognize the song, but when I did, I was happy---it's a song I love that she's never shown much interest in---"I'd Really Love To See You Tonight".  An old 70's soft rock classic!  She just kept singing the first few lines---"Hello, yeah, it's been a while, not much, how 'bout you?"  She probably sang those 100 times over.  What struck me was how although it looked like she wasn't really paying any attention to the tasks at hand, she kept getting them right.

On the way home, as I processed the whole experience, a few thoughts kept popping up.  One is that Janey's mind truly is different than most.  Not less than most---different than most. It made me think how often I've assumed she was paying no attention, because in her situation I'd not be able to pay attention while screaming or singing or watching a show intently, but from seeing her at work, I realized her mind seems to work on more than one track at once.  

I also kept wondering how often Janey is bored out of her mind.  I've always suspected and in fact felt quite sure she knew more than she showed, but I don't think I realized how much more.  However, it's so hard to access that knowledge, and to know what she knows and how to teach her.  Tony put it well.  He said he always tries to not bring work home mentally, to leave work thoughts at work, and it's like Janey does that with school, and in fact with much she learns in any way.  If it's not something she needs to show in a particular situation, she doesn't show it.  I've asked her to count lots of times, and to use action verbs, and all that---but she seems to feel they aren't something she needs to show she knows, unless it's obviously a testing situation (and then of course only if she is in the mood)

I'm very glad we are part of the BU study. It's the kind of study I heartily support---not one that is aiming to figure out WHY she is autistic (and unspokenly, figuring out how to prevent future autism) but one that is trying to figure out the autistic mind---for that is indeed also my main task in life---figuring out Janey.  It's going to be a lifetime study on my part, and one worthy of the time spent.

Wednesday, March 1, 2017

Re-evaluating Janey

Today was supposed to be Janey's IEP meeting day, the re-evaluation one that takes place every three years, but one of her therapists didn't have a chance to evaluate her, so it's been delayed until the end of the month.  I did get, though, a progress report on her ABA therapy, and it was interesting to read. As I was preparing mentally for the meeting over the past weeks, I was also doing my own mental evaluation of the last three years.  How has Janey grown?  What areas are still tough?  What do we want to work on for the future?

The last three years for Janey has been eventful.  As most of you know, they featured hospital time, both time in a psychiatric hospital (with six horrible days of "boarding" in a children's hospital before that), and time in a regular hospital, for a very complicated burst appendix.  Those stays are the big things that stand out about the last three years, but there's a lot more to think about.

I'm not sure I'd go that far, but it's the only image I found that worked at all!
How would I define Janey right now, if I looked at her with fresh eyes?  Well, she's mostly a happy 12 year old, and that is wonderful.  That alone is almost enough.  She has many more happy than sad days.  She knows what she enjoys, and she knows how to ask for those things---car rides, music, videos, food, snuggling.  She's gone through puberty earlier than most, and she looks like an adult, physically, which is tough in some ways but not in others.  She continues to be very intellectually disabled.  She talks mostly in single words or phrases, she doesn't reliably recognize letters or numbers, she can't write or draw---she is and, baring a miracle, always will be unable to care for herself, live on her own, work (except in some hugely sheltered way).

The joy of her life, and the area where she in many ways is far beyond most, is music.  She has hugely sophisticated taste in music.  She knows what she likes and doesn't like, and lets us know.  Although she won't perform on demand, she very often surprises us by singing a song we don't think she's heard for years.  I do think she knows every song she's ever heard by heart, tunes and lyrics.  Music is her joy in life.  She learns far more easily when music can be part of the lesson.  She loves to dance.  It would be impossible to describe Janey as a person without mentioning music.

There are parts of life with Janey that are intensely frustrating, for us and we are quite sure for her.  Toilet training---not there.  Closer than three years ago, but inconsistent and far from reliable.  Communication, especially in terms of what is upsetting her, is still very hard for her.  She still often self-injures, by biting her arm or scratching her chest.  She occasionally lashes out at us or others---not as often as in the past, but when she's very upset, it's a concern.

The ABA evaluation, even in their required formal language, captured a lot of what makes Janey Janey.  Even the statistics---there would often be a task she did with 100% accuracy on one date and then with something like 20% accuracy on a later date.  The notes say that much depends on her mood and her level of arousal.  Janey in her best mood is so different than Janey in her worst mood that it's hard sometimes to believe she's the same person.  Nevertheless, she's made progress, and sometimes we even see school progress carried over to home.  She will ask for help when she needs it, she sometimes tells us when something hurts ("does your toe hurt?), she responds with "yes" and "no" more readily than she used to.

I think almost the more important three year re-evaluation is that of Tony's and my attitude.  I don't think any parent could go through the scares we did with Janey without an intensification of how much we treasure her.  We are so glad she's here with us.  We worry less than we used to about progress.  We accept that much of how Janey is is how she will remain, and that is fine.  On the less positive side, in some ways, we are tired.  We still so very much wish there was more respite available.  It's the week of both our birthdays, and that is always a reminder that autism, or Janey's brand of autism, never, ever gives you a break.  She comes first.  We don't have a life outside of caring for her during any non-school hour.  We love her so much, but she consumes us.  We can accept that, but I think we could be better parents to her with more help.  There are parts of life with Janey that would challenge the patience of a saint.  And then, there are parts of life with her that would delight and enchant anyone.

It's been a true privilege to share Janey's life with all of us, and to be able to be a part of your lives.  I will continue to do that for as long as I can, hopefully for the rest of my life.  It's the way that, with the restraints life with Janey has placed on me, I can try to light a candle instead of cursing the darkness. I think of all the others living this life often, and I hope all of your re-evaluations contain some elements of joy.

Tuesday, February 14, 2017

None of the above

I used to be a big fan of women's magazine quizzes.  You know the type.  They give a scenario like "Your doctor has told you that you need to lose weight.  You..."  A.  Don't even bother to try, because losing weight is impossible  B.  Go on a starvation diet until you have lost the amount he wants  C.  Start eating a healthy diet full of fruits, vegetables and whole grains.   You all know what the right answer is supposed to be, and picking it can give you a good feeling, a feeling of superiority to those people who might pick A or B.

In real life, it isn't always quite as clear.  I kept thinking about that yesterday.  Let me pose the question to you all...

It's the third snow day in a row.  Your twelve year old daughter with low functioning autism is very unhappy.  She has spent much of the day screaming.  She didn't sleep well the night before, and you finally get her to lie down with you on her bed for a possible nap.  As soon as you are lying down, however, she said "Do you want cheese?", which means she wants you to get up and get her cheese from the refrigerator.  You are bone tired, and she is perfectly capable of getting the cheese herself, and you say to her "If you want cheese, you go get it and bring it to me"  She reacts by screaming loudly and kicking you.  You...

A.  Start screaming back at her, telling her you are just about at the end of your rope, and that she needs to stop acting that way, and you are so tired of it all, and....so on.

B.  Overcome your aches and tiredness and get up and go get the cheese, knowing that might be the quickest way to get past this whole bit.

C.  Tell her calmly she can't kick you, and that you are going to walk away to let her cool down, and that when she does, you'll talk about the cheese.

You probably know what the answer is supposed to be.  However, A and B are pretty darn tempting, in the moment, and I may or may not have picked one of those choices yesterday when confronted with this very scenario.  However, I eventually accessed my inner magazine quiz self, and picked C, the "right" answer.  Janey's response?  As soon as I'd gone into the next room to let her cool off, she found a bag of chips, opened it and threw chips all over her bed, crushing the chips as she did so, so the bed was covered with chip crumbs.  I stood my ground and stayed away, figuring that chips can be cleaned up.  So she upped her game.  She ran to the TV and started pounding it with her fists, something she knew I couldn't ignore.

So...what next?  What't the right answer there?  Before you decide, keep in mind that Janey is as tall as I am now, and as strong.  It's not easy for me to physically stop her from doing things like the TV pounding.

The answer is that there isn't a right answer.  It's a "none of the above" type situation.  As happens fairly often in this life we are leading with Janey, we pick the least harmful wrong answer.  What I did was tell her to stop hitting the TV and I'd get the cheese, which I did, and which she ate a bite or two of before resuming her screaming.

I woke during the night last night, my mind racing.  I kept thinking "I'm not equal to this task.  I don't know how to keep going.  This is just impossible"  I finally woke Tony and we talked, and I calmed down, and woke up this morning ready to keep on trying.  I know in my heart I'm doing the best I can, that there really isn't any correct answers for some of the challenges we face as a family.  But boy, could we use some respite, some help, some something. Until then, we'll keep going, because that is always the default answer---just keep going, because there is really no other choice.

Friday, February 10, 2017

Snow Days

We had a fairly good-sized snowstorm yesterday, which resulted in a snow day, and another snow day today to finish the cleanup.  As many of you are all too aware, unexpected days off are not a big favorite of Janey and others like her.  However, the past few days haven't been bad at all.  They have been more...interesting.  

Tony was home yesterday too, as his office was closed.  That was great.  Janey had had a tough week, and I was prepared for a day with lots of screaming and tears, but I don't think I saw either one once yesterday.  She was happy and a little bit manic.  She ate a huge amount, and ran around the house a lot, and danced a ton with Tony.  At one point, she suddenly said "Shut up!" in a loud, jovial voice.  She then proceeded to pace back and forth and say "SHUT UP!" for about an hour.  I'm not sure where she picked that up, but she enjoyed it a huge amount, and so we just went with it.  She asked a lot for car rides, but did well when we told her that just wasn't possible.  I kept having her look out the window, although I don't think she quite got why the blizzard conditions were standing in the way of a car ride.  

Janey is usually fast asleep by 7 or 7:30.  She's big on early to bed and early to rise, like her father.  So when she was still awake at 8, we were a bit surprised.  We took turns lying down with her.  She stayed on the bed, playing off and on with her iPad (which we let her take to bed, as it generally doesn't interfere at all with her sleep) and singing and asking for food (which we didn't give her, as she'd had plenty during the day)  I was with her until 10:30.  She was still wide awake.  Tony took over and I slept until 12:30.  I relieved Tony---Janey still wide awake.  I lay down with her and she looked at me with a hugely happy face, just smiling and staring at me.  My eyes kept closing, but when they opened, there she was, watching me.  I last saw her awake at 1:30 am.  At that point, either I didn't wake up again or she finally went to sleep.

We have a few theories about the sleepless night.  She didn't go outside at all, all day, and maybe the lack of daylight did something.  Also, because she couldn't go for a car ride, a few times Tony took her upstairs to where his brother lives, and she had "butter", which is what she calls Nutella.  Chocolate is often the culprit when she doesn't sleep, although lately that is usually only if it's close to bedtime, which it wasn't.  My main theory, though, is just that she was in one of the moods where she's hyper-alert, and sleeping is hard when you are like that.

Today, she was sleepy.  She woke late and then took a nap.  Tony worked a half day.  She was still peppy, but not quite as much as yesterday, and there were a few more tears and screams.

We noticed, both days, something we often see when Janey is home with both of us for a day or two.  Her talking increased.  On days she goes to school, we hear very little talking in the afternoon or evening.  I think she's tired out, and also, perhaps associates talking with schoolwork, and decides to give herself a break at home.  It's fine, but it's nice hearing more talking.

An illustration for "The Ten O'Clock Scholar
Yesterday, when I was attempting to read her a book and she wasn't interested, I quickly before closing the book asked her to point to a few things in the pictures.  With the air of wanting to just make me happy so she could move on, she quickly and with complete ease pointed to three things---an owl, a blackboard and a bell tower.  All of those are words she's never said, to my knowledge, and words that I'd really have no way of knowing she knew.  I've done quick pointing tests with her like that enough to realize she has knowledge of the meanings of many, many words she never uses or lets on she knows.  I wish there was a way she could use these words, to enrich her ability to actually communicate, but I just don't really know how to help her with that.

Today, we were playing a game we often play, where I recite the start of a nursery rhyme and she finishes, or finishes some of it and waits for me to say the next line, and we go back and forth.  I love having an iPhone, because I can quickly grab a video, which I did.  I posted it on the Facebook companion page to this blog, if you are interested.  It's another example of things Janey knows you would not know she knows.  I would say she knows hundreds of nursery rhymes.  Of course, among the ones I started the film is one I don't think she did know ("A ten o'clock scholar"), but that is a rare thing!  If I've read one to her two or three times, it's in her head someplace, memorized.

So---I hope tonight is a better sleeping night.  I hope Janey continues the happier mood for the weekend.  And I certainly hope the storm predicted for Sunday night doesn't happen, so Monday is not another snow day!

Monday, February 6, 2017

Winter

When I was little, I used to feel upset when people would say February was their least favorite month, because my birthday was in February, and it somehow felt like a personal insult.  Well, I'm finally forced to admit I'm not too big on February myself.  I haven't written for a while.  I've been feeling blue, and winter feels long.

I am sure it's not politically correct to say so, that it's one of those things I'm not supposed to admit, but sometimes, the unchanging nature of life with Janey gets to me.  Her progress lately, if there is any, is very, very slow.  Sometimes it halts altogether, or moves backwards for a while.  With typically developing kids, the changes in their interests or hobbies or friends or activities can move at a pace so fast it's hard to keep up with.  With Janey, that isn't the case.  She watches the same videos, over and over and over, that she did five years ago.  She doesn't have friends.  She doesn't partake in any outside the home activities.  Every day feels a lot like the day before. And of course, much of that is on me.  I should somehow make her life more varied.  But I am not sure how.  It's not like there is a huge list of possible classes or lessons or clubs waiting for her to join, or friends calling to get together with her.  She goes to school and she comes home.

As people have said to me often, it's very possible Janey doesn't crave variety in her life the way others might.  She might be very content with things staying the same, and indeed I think that might be the case. But as this winter wears on, I'm feeling---I'm not sure.  Restless.  Worried.

In the background of all this is the tense feeling political news, the uneasy national mood.  It used to be that the internet provided much of what I needed to keep feeling connected to the outside world.  But lately, it's hard to get online without feeling bombarded with strident differing views of every topic.  I rethink every comment I might have---is this going to set someone off?  I think of myself as mainly apolitical.  What bothers me is not so much any actual players or issues in the political scene, but the tone of the whole debate.  It feels like a "gotcha" kind of game, like an argument that can only be won by being fierce, or angry, or hyper-alert.  And where does that leave someone like Janey?  Where is the caring for those not armed for such a battle?  I had a strange dream the other night, a dream we were somehow at war and Janey had been drafted to fight. I screamed out to whoever was in charge "What kind of world is it when you expect someone like Janey to be part of warfare?"  And that is it.  It feels like there is little place for those who are dependent on others, who can't get out and fight for their rights.

So...we keep on.  We do our best, all of us out there living this life, to give our kids the best life we can.  Janey will come home from school.  I'll ask her about her day, as I have so many hundreds of times.  She won't answer.  I'll try to get her to use the bathroom.  She won't.  I'll end up changing her clothes and her bedding.  She will ask for cheese, for chips, for salami.  I will have them or I won't, she will eat them or she will scream.  She will want a shower, and she will ask to get out of it when she really means she wants the water adjusted.  She will ask to watch Kipper, and then I'll put on the wrong episode and she'll scream.  She will ask for a car ride.  I'll tell her Daddy will be home soon and maybe they will take a ride. I will hug her and tell her I love her.  She will laugh and hug me back, and we will get through another day.  And that is how the years will go on.

Thursday, January 26, 2017

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.

Tuesday, January 24, 2017

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!

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.