Saturday, October 31, 2015

Janey's Halloween

Growing up, I'd say Halloween was my favorite holiday.  I vividly remember counting the days until it arrived each year, as most people count down to Christmas or their birthday.  I loved it for the candy, of course, but also because it felt like a day that usual life took a turn.  You could go to people's houses, knock on their doors, and they would give you candy.  Since we lived in the country, my father drove us around town, and our haul was limited a bit by that, so I used to daydream about when I would have kids, and we'd live in an area with LOTS of houses, and they could trick-or-treat the night away and come home with HUGE bags of candy.  That did happen, for a few years with the boys.  But kids grow up and either don't go out any more, or go with friends instead of parents.

Janey never really warmed up to Halloween in past years.  She didn't much like dressing up, and she wasn't terribly motivated by candy.  I didn't push it.  I wished she would be interested, but she wasn't.  Last year, Halloween came right before the very worst time ever, when she was really breaking down.  We went to one house only, our next door neighbors, and she was done.  A few others years, we didn't even try trick-or-treating.

This year, I signed Janey up for a Halloween party put on the autism support organization for our area, for the 30th.  We went last weekend to get a costume.  I let Janey pick what she wanted, and she pointed to a shimmery long cape, overpriced, but I got it anyway.  I didn't get any hats or masks or other accessories, because a cape is about all I figured she'd tolerate wearing.

We went to the party last night.  It was not a hit, but not a disaster, either.  We stayed about 10 minutes.  The room was hopping with kids and adults.  We got there about half an hour after it started, which I thought would be good, as I knew Janey wouldn't want to stay the whole time (2 hours) but that might have been a mistake, as things were so crowded once we got there.  It was set up to have volunteers take the kids while the parents sat at the edges of the room.  I liked that idea, but I knew in practice it might not work with Janey, and it didn't.  The room was set up in activity stations, with the idea that each child would do an activity and then get candy at each one.  The first activity was decorating a treat bag, with coloring and writing a name and stickers.  Janey can write her name, sort of, under ideal circumstances, but not with a stranger in a noisy crowded room, and she doesn't color.  So they lost her quickly, and she ran over to us and said "want to go for a car ride?"  We tried to get her to stay a little longer, but it was obvious she was done.  In keeping with our new philosophies, we left, although I have to admit I was disappointed.  It is hard when she doesn't tolerate things that are specifically for kids with autism, and I'm always surprised how many kids with autism seem to be having a great time at them.  I love it that parties like this one are available, and I'm glad we went even for a little while, but still...it's hard sometimes when even in the world of autism, Janey stands out.

After the party, I wasn't hopeful for trick-or-treating, but I really wanted to give it a try.  First, I took Janey to our next door neighbor's house, the one house we did visit last year.  Janey has had the urge to trick-or-treat there almost every day since, and it's hard to convince her that it's a once a year thing!  So she was very happy to go back there!  They are so sweet and kind to Janey.  We are lucky with our neighbors on both sides.  Then, we went over to my friend Maryellen's house a few miles away.  I figured at least Janey would be able to trick or treat there.  Once we were there, I decided to try taking her to a few houses around their neighborhood.

And that was...wonderful!  I am still almost in tears over how well it went.  Janey was excited!  She marched eagerly along, going from house to house, taking a piece of candy, sometimes saying "trick or treat" and sometimes saying "thank you!" but always smiling and flapping with excitement and singing to herself.  Everyone noticed how happy she was, and we got absolutely nothing but positive looks and comments.  It was like a dream.  These weren't people I knew---they were Maryellen's neighbors, not mine, and they hadn't met Janey before, but they were to a person kind and sweet to her.  We went around for about 20 minutes, picking up lots of candy, and stopped while Janey was still very happy.

I think as Janey gets older, in some ways, people accept her more.  I didn't say to anyone that Janey was autistic, but I think everyone knew.  She is almost as tall as I am, she looks older than her actual age, but I held her hand all the time, and spoke for her when she didn't speak.  And when Janey is happy, there is something about her that draws people to her.  I might just be saying that because she is my daughter, but others have told me the same thing.  She is so blissfully happy, so purely happy, that others are happy being around her.

This has turned into one of my longer blog entries in a while!  I'll stop for now, and just say Happy Halloween to everyone.  And say---keep holding out hope.  When I look at how Janey did tonight, I am amazed.  It might never go this well again on Halloween, but I have tonight to remember.

Wednesday, October 28, 2015

Speaking for Janey

There's a lot of buzz lately about Sesame Street and their introduction of a muppet with autism, Julia.  I haven't spent a lot of time looking at their resources, although I read the on-line book they have about Julia and liked it a lot, probably because Julia sounds a lot like Janey.  But in keeping with a habit I have too often, I've read more about reactions to the whole Sesame Street autism program than I have their actual material.  Much of the reaction is positive, but some of it was critical, not so much of the material for children, but the videos for adults, and a lot of the criticism was that the autistic kids were not allowed or shown to speak for themselves---their parents were speaking for them.

I very much feel that whenever possible, it's important to listen to people with autism.  I have gotten many of the very best ideas for helping Janey from people with autism, especially one wonderful friend who is active on Facebook.  Thank you, Sophie!  However, I kept feeling when reading the criticisms---what about Janey?  What about kids like Janey, who cannot speak for themselves?

Of course, in some ways, Janey can speak for herself.  She can tell me her basic wants, if they are in words she says---"Snuggle on the bed!  Want cheese!  Want Chinese food!  Do you want to take a car ride?"  That's the kind of speaking that others can understand, but I think Janey has a lot more to say, and she literally can't say it.  She doesn't use any communication apps or tools, she has a very limited ability to communicate verbally---if you were looking to learn about Janey's world by listening to her, by her speaking for herself without any help, you wouldn't learn much.  Or maybe you could, if you spent a day with her, but in terms of the bigger world understanding Janey, that is not practical.

And that is where I come in, and my husband Tony, and my sons.  We speak for Janey.  We might not always get it right, but we try.  We want people to know Janey, and in a larger sense, to know all the Janeys of the world, the people that are not able to communicate in a way that is understood by most.

Tony wrote about life with Janey as a guest post here, and I loved it.  William and Freddy, my sons, have written guest posts too.  When reading about how people were upset that kids with autism were not being allowed to speak for themselves on the Sesame Street autism page, I thought "everyone in the family has done a guest post except Janey, and she's the focus of the blog"  And of course, she can't.  Or can she?  I hope, I very very very much hope, that I have spoken accurately for Janey with my own writing.  I'm sure I haven't been perfect.  I'm sure there are things Janey would have wanted everyone to know that I haven't written.  But I've done the best I can.

If we insist the only valid information about autism is by those who can speak for themselves, we leave out a lot of people.  Should I never speak for Janey?  Should I wait until the day that might never come, when she can speak for herself?  I don't think so.  I don't like to be controversial, but in this case, I will say quite strongly---I will keep speaking for Janey.  She deserves that.  When and if she is able to speak for herself, I will move heaven and earth to give her a forum for doing so, but for now, I will do my level best to speak for her, to give her and people like her a voice.  She deserves that.

Saturday, October 24, 2015

In The Driver's Seat (Guest post by Janey's daddy!)

For the first time ever, my husband Tony wrote a guest post!  It's written as a letter to Janey, to show appreciation of the changes that have allowed us to travel a bit more lately.

Thank you, Janey!

For the past four months, Janey, you have allowed me to be in the driver's seat of Daddy's car. Almost every day, I take you on at least one car ride, because you want me to play music for you in my car's disc player. This is something you have wanted me to do since you came home from the hospital, after you were very, very sick from your appendix bursting.

You like these car rides with our music that I play for you so much that you seem to also enjoy your bus rides to school in the morning and the afternoon bus rides when you come home from school.  A lot of times you run happily onto the bus in the morning, and Mama tells me that you run off the bus all happy in the afternoon and bolt right into the house.

Daddy's car rides with our music seem to make you so happy, even after you have been very angry or sad, that your brother William said to me, after he came along with us once, "wow, it's like giving Janey medicine." 

Most times our drives together are about an hour long, but sometimes, you and Daddy like the music so much that we drive for two or three or more hours. You hear some songs, like Santana's "Soul Sacrifice" from Woodstock in 1969, or The Ventures' "Wipe Out" from Tokyo in 1966, and you soon look like a humming bird as you drum your arms so fast out of happiness that they become a blur!  Sometimes Daddy and Mama think that our old car is breaking but it's really just you dancing and rocking so fast in the back seat!

And when we drove far away to take Freddy to his new school in New York, and to Maine to see Nana, Grandpa, and Aunt Sarah, you were so nice and happy in the car with our music playing, even when we were stuck for a long time in silly Massachusetts' traffic! And you were so good and happy in the hotel houses we stayed in.

And Janey, you put a big smile on Daddy's face whenever you come up to me now and say the first words of a song you want to hear on the next car ride, like, "You want to hear "generals gathered in their masses"?" That song is called "War Pigs" by Black Sabbath, which you like because your brother William has played it on his guitar and sang for many years in his room.

Mama has made you many music discs and put songs on your iPod since you were a little girl that we now play in the car, like "Angels We Have Heard on High" and Johnny Cash's funny song "In the Jailhouse now." And Janey, when you want to hear "Folsom Prison Blues" and you make your voice sound lower and say "hi, I'm Johnny Cash," you do that so well! We play songs "Beat It" and "Bad" from the disc Freddy gave to you for Christmas.  And you laugh a lot when daddy plays Weird Al's "Eat It" and "Fat." Daddy laughed so loudly when you said to me "you ain't fat, you ain't nothing!"

Janey, I hope we don't get too much snow this winter, because I still like to drive you around!

Again, thank you, Janey!

Sunday, October 18, 2015

Little getaways, now surprisingly possible

This past weekend, we took a little trip to Maine. We stayed a couple nights at a hotel, and got to see my dear Aunt Sarah, my mother's younger sister.  I haven't seen her in eight years, and she hasn't seen Janey since then, so it was wonderful to see her.  What was also wonderful is that the trip was even possible.

A year ago, or pretty much any time in the past eight years, we could not have pictured a weekend trip working at all with Janey.  We basically took no trips during that time, at least the kind that involved a good deal of driving and time in a hotel.  Janey would never have tolerated the drive, and a hotel would have been a nightmare, as she would have been almost certain to scream so much that we would have been kicked out.

The inability to travel with Janey was hard.  Tony and I love travel---not big time exciting vacations, but weekend or a little longer trips, the kind where the biggest entertainment is seeing new places from the car window, where we get fast food to bring back to the hotel, where we see family or friends for a bit and just relax for a while.  We did that kind of thing a lot with the boys when they were younger.  We saw a lot of the Northeast during that time, and had a lot of fun swimming in hotel pools and eating at rest stops.  We wouldn't even have wanted to take Janey to Europe or Disney World or on a plane, but we did long to just be more able to go to see my parents in Maine for the weekend, or something like that.

Tony and Janey on a little stretching legs stop at China Lake, Maine.
Something happened this summer.  Like we often date Janey's autism to the only very big family trip we ever took, a cross-country drive when she was three, we are dating this change back to Janey's long hospital stay from a burst appendix.  Janey seems changed.  There are still tough days, lots of screaming times---we aren't under any illusion that life will be easy-breezy from now on---but somehow, it has become possible to travel a little with Janey.  A big part of it is she now loves car rides, just like Tony and I do.  She's happy in the car for almost unlimited amounts of time, as long as music is playing and we keep moving.  She also, based on this trip and our last trip to take Freddy to college, likes hotels.  When we got to our hotel in Maine on Friday night, we worried about the noise for a very different reason than we would in the past.  We worried her yelps of joy would bother people.  She was overwhelmed with happiness to be in the hotel room.

Thinking about it, it's partly that Janey has changed, but it's also partly that we have changed.  It's sort of like a compromise.  We do what Janey likes, more and more.  For example, the music in the car is all for Janey.  Luckily, she likes a wide variety of good music, but if she doesn't like a song, we don't listen to that song.  We plan our days so that she will be content.  Yesterday, Tony stayed at the hotel much of the day with Janey, doing little drives to get food and letting her dictate the day's pace, while I spent time with my parents and aunt.  We didn't try to do everything with Janey in tow.  Later, we went to my parents' house, but as soon as it was apparent Janey was tired and ready to go, we left.  We all got to do some of what we liked, by making sure Janey was able to feel comfortable and happy.

It feels like a bargain, a trade.  We are getting what we want---the ability to do more of what we enjoy, and Janey is getting what she wants---her needs put first.  It's a win/win---a nice example of a rare win/win in life.  It's making us able to look at the future with a little more hope than we have had in a while, thinking of seeing the country a little at a time, in our own way.  It wouldn't be the two of us, as we daydreamed about years ago---it will be the three of us, and I think we can make that work.

Tuesday, October 13, 2015

800th Post!

Eight hundred posts.  Wow.  That's over eight years, but boy, do I like to write a lot, and ramble on at times, and most of all, have all of you to talk to and share lives with.

I thought, for fun, my own fun anyway, I'd look at each 100th post---the 100th post, the 200ths, etc., and see what they were about.  So here goes!

Post 100---"Crying Day"

Okay, that's not a cheerful one to start with.  It's about a common theme---Janey's crying.  She was 5 and a half then, and I was discouraged, and dissing the Holland story.

Post 200---"Toys"

Another theme I hit on fairly often---how it's hard to find toys for Janey, and what kind of toys she does like.  I think I obsess over this a little, as I did here when she had just turned 7.  I like toys.  I love toys, maybe, and sometimes the hardest things to feel at peace about with autism or I think any special need in a child are the things you looked forward to sharing with them that are never going to happen.  Janey's not going to beg me for an American Girl doll, or the latest Shopkins, or anything like that, and I don't think even now I'm quite resigned to that.

Post 300---"Why is the Crying So Hard?"

Another crying post!  This time, I was trying to figure out why crying in particular is something I get so upset by, and just can't ever ignore.  Janey was seven and a half here.

Post 400---"Another Day, Another Book"

A little different!  I love to read, and I do a lot of book reviewing, and that other life snuck into the blog here, in the form of an autism memoir.  I don't read as many of them as I'd think I would---I think I need a break from autism when I read, most of the time.  But when I do read a book about autism, I usually write a blog post about it.

Post 500---"Good Night, Daddy!"

A cheerful one, for a change, about Janey telling Tony good night totally on her own.  She was eight and a half.  Whenever something like that happened, you can tell on the blog that although I'm trying not to get my hopes up, I'm still hoping it's the start of a big new change.  I guess it's good not to give up that hope, but now I do try to enjoy those little moments on their own, without projecting what they might mean for the future.

Post 600---"Letting Go of Janey's Hand"

Written when Janey was nine, this one is about the baby steps I was taking toward letting Janey walk without holding my hand all the time.  Unlike the talking breakthroughs, this one has lasted.  Janey really doesn't bolt any more, and I feel pretty safe letting her walk without holding her hand, even on the sidewalk of our busy street.  It's nice to read back about when I started doing that!

Post 700---"What it's like to visit a psychiatric hospital"

Well, that's not an uplifting one.  I wrote it last December, when Janey was 10 and was an inpatient at Bradley Hospital in Rhode Island.  I wrote this one partly just for myself, to remember what the visits were like, and partly because I was so unprepared for the whole hospitalization time.  I hoped (and hope) none of you ever have to go through that, or go through it again if you have before, but if sometime in the future you did (and it happens more than I ever realized), I wanted others to have a little bit of an idea what it was like.


And here we are at post 800, sort of a clip show post!  It's been a long, strange last 8 years, the eight years since Janey was diagnosed at age 3.  I can see me writing post 1800 some day in the future.  Autism is lifelong, and I will write about Janey until I am no longer able to.  I hope that is a long time from now.

Sunday, October 11, 2015

No Questions Asked

It's almost impossible for me to write legibly by hand.  If I had grown up in today's world, I'm quite sure I would have been diagnosed with dysgraphia or something similar.  As an adult, this is not a huge problem.  I type everything---out sick notes, grocery lists, birthday greetings---whatever needs writing.  But lately, I've been playing out an extended analogy in my mind.

What if every day, all day long, I was being asked to write by hand?  What if almost every waking hour, someone handed me paper and pencil and told me to write?  What if this happened in every context---out of the house and in?

What if I were offered tool that were supposed to help me write, but that still left it very hard to do---tools like special pens, nice smooth paper, a great writing desk?  What if, when I resisted these tools because they still left it very hard for me to write, instead of backing down, I kept being offered them, with new tools being tried all the time?

What if, once in a while, if I put all my effort into it, I wrote fairly well?  What if instead of people accepting this as something I could do when conditions were just right, they took it as proof I could write well ALL the time if I tried a little harder?

What if I had to write to get the things I wanted, even if people knew perfectly well what I wanted?  What if I brought someone the food I wanted, or the video, or the toy, and instead of just giving me what I wanted, they insisted I write it down?

What if I were feeling upset, crying, screaming, and people came over and said "If you could just write down what was wrong, we could help?"

Of course, the writing here stands in for Janey's speech, and in a large sense, her communication overall.  All day, everyone around Janey prompts her to talk, asks her to talk, cajoles her to talk.  People try getting her to talk by means of iPad programs, picture exchanges, sign language.  When she does speak well, people assume that means she CAN talk and therefore, needs to talk more.  People prompt her to "use her words" even if it's pretty plain what she wants.  And people, when she's at her most upset, beg her to tell them what is wrong.

By saying "people" here, I mean, most of all, myself.  I have done all those things, often.  I constantly ask Janey questions, hoping for answers.  I start sentences for her, hoping she will finish.  I present her with alternatives to verbal talking.  When she does speak well, I latch onto it, hoping it is proof she will someday talk easily.  When she brings me a glass and a container of juice, I ask her what she wants.  When she screams, I say "What feels wrong?  Why are you crying?"

After my last blog post, I thought and thought about what I was doing.  And I decided to try to change.

For the last few days, I've done my level best not to do ANYTHING to try to get Janey to talk or communicate.  I've stopped asking her questions.  It's very hard to do.  I catch myself 20 times a day about to ask one, and quickly change it into a statement.  I'll say "What do you want to watch...um, I'll put on the TV and see what's on!"  or "What's wrong, sweetie...oh, uh...you seem very sad.  I will snuggle you"  I have been talking to her, more than ever, but talking without asking for a return conversation.  If I know what she wants, I either give it to her or tell her why I can't.

It's very early to say, but the results have been quite astonishing to me so far.  Almost immediately, I saw an uptick in Janey's talking.  As I wrote on Facebook, within an hour, she had spoken one of her longer sentences to me---"Want to snuggle on Mama's bed with some cheese?"  I've heard a few of the rare non-asking for things statements---outside, she saw one of our resident stray cats and said "That cat is Tommy!"  (it wasn't Tommy, but that's beside the point!)  When we wants to watch something to TV, I scroll along all the possible choices without comment, and she yells out what she wants "Want Uncle Rusty!" (a favorite episode of Little Bear) or "Want quilt one!" (her favorite Courage the Cowardly Dog)

This trial of not asking for communication is part of a larger general new philosophy that Tony and I have started, without really anything as formal as talking it about it or putting rules to it.  In general, we are trying to keep the stress level of Janey's life as low as possible.  From what those with autism that are able to communicate their feelings say, just living through a day with autism can be very stressful.  Maybe my job is to not add any stress, to reduce stress wherever I can.  This new attitude started while Janey was in the hospital, dreadfully sick.  Janey has been dealt a hand in life that is not always easy.  I hope this experiment, this test of reducing the pressure on her in a little way, helps her.  If not, we'll keep trying, to see what does.

Wednesday, October 7, 2015

Does autism acceptance include respecting NOT communicating?

I like to think I'm pretty good at accepting Janey for who she is, at celebrating what she brings to the world, at not wishing she was who she isn't.  However, I've never quite accepted one part of her---her limited communication.

Janey's speech is a mystery to me, and to many who know her and work with her.  It's hard to describe how it is.  I use the term "minimally verbal", which I am not sure is an official term.  Janey says a few things readily.  She asks for food and TV shows by name.  She asks to "snuggle on the bed" and for a shower.  She says "want disc" when she wants to hear music, in any form.  That's about it, for communication type talking.  However, she CAN say almost anything, in echolalia form.  She can recite movie or TV lines with precision and expression, for hours on end sometimes.  She can also sing what I believe is any song she's ever heard, in tune and with all the lyrics, although never on demand, just when she wants to.  So it's not a matter of a problem with forming words.

Of course, speech isn't the only way to communicate, but Janey doesn't communicate much in other ways either.  She has shown violent opposition to iPad type speech programs or PECS type picture exchange talking, at least at home.  She has no interest in sign language.  She doesn't like to point out things, or gesture.  She can't hold a pencil well enough to write, and shows no interest in doing so.  She isn't able to type.  Overall, her communication of any kind is quite limited.

And I don't accept that well.  I want her to communicate with me.  I want it very much.

This picture captures the look I'm talking about pretty well.
A scene that has been repeated hundreds of times...Janey and I are doing her favorite thing, snuggling on the bed, the bed she calls Mama's Bed although it's been her bed for years.  She is very happy.  I am singing to her, or making my fingers pretend to be people jumping up and down, or reading her a nursery rhyme book, or often, just smiling at her.  And then I go and spoil it.  I pressure her to talk.  I say something like "How was school?"  Or I start a sentence for her "Today at school I...."  Or when I'm reading a nursery rhyme, I stop in the middle "Humpty Dumpty sat on a wall, Humpty Dumpty had a great....", waiting for her to say "fall.  And hundreds of times, the same thing happens.  Janey's face falls.  She gets a tense, distant look.  She looks scared, anxious.  We have gone from connecting to not connecting, strangely enough, because I am trying to connect in the way I want to connect.

What if I accepted Janey is communicating just as much as she wants to?  That would be a radical thing for me to accept.  But it might also be a realistic thing to do.  Janey's speech has never really improved from the time of her big regression, at age 3.  It's sometimes wobbled---gotten better for a while, and then worse for a while, but it's never stayed consistently better.  And this is despite speech therapy three times a week for eight years now, despite being in a family that surrounds her with talking constantly (none of us are very good at ever shutting up), despite so many attempts to give her alternative ways to communicate.  No matter what I've done, she communicates just about the same amount as she ever has.  So what if I just decided to stop pushing her to do more communicating?

When I think about it, Janey HAS communicated her feelings about the subject of communication itself pretty plainly.  That look she gives me, and the fits she has thrown when we insisted she "use her words", the anger reactions to apps like Proloquo---that's communication, communication I have chosen not to accept, not to hear, because I don't like the answer.  What if I respected what she's told me?  What if I gave her credit for communicating just as much as she wants to?  She CAN talk.  She CAN use an iPad.  If she wants to communicate more, well, she's shown me over and over that if she wants to do a thing badly enough, she does it.  So maybe it's time to listen to her, and stop pushing her.  Maybe eight years of her firmly telling me in her own way that she's communicating as much as she wants to should be enough for me to finally get the message.  Maybe sometimes acceptance means accepting that what our child wants isn't what we want them to want---maybe.