My high school freshman

I thought I'd make good use of being up with Janey in the middle of the night to update a bit here!  I can't sleep lately either, so I don't really mind her being awake as much as I sometimes can.

How are things going, you might ask?  Quite well, really.  And I am knocking on wood all over the place saying that.

Janey started high school earlier this month.  I was VERY nervous about it.  She hadn't gone to a new school for many years, and the high school we picked is far away from our house.  But it had the program we wanted, as I've written about. And so far, so good!  The bus has been more reliable than it usually is, despite having to navigate all kinds of complicated Boston traffic and roads to get her to and from school.  We are getting good reports from her teacher, who although I haven't met him in person yet seems great.  We get a page each day, partly self-reported with stamps by Janey, telling us what activities she had, whether she ate much lunch or not, and whether it was a great day, a good day or a not so good day.  There's only been a couple not so good days!  Her teacher (sort of like her home room teacher, as she has several teachers and they rotate around the 4 or 5 connected rooms that are for her program of 40 kids) writes a little note every day and is great at being touch by email, and that makes me so happy.  I love knowing a bit about how Janey is doing each day.

She even has electives!  She didn't elect them, but they were well chosen.  She has dance almost every day, which is just a dream come true.  I've always wanted Janey to get more of a chance to dance.  She has Very Special Arts most days, which is music and art for special needs kids, and she swims several times a week.  Every Friday, there is some kind of outing.  We send in a little money for it.  She has gone to the corner store a few times, and this Friday to the Dollar Tree!  I love the idea of her getting out and about.

Janey has seemed happy at home most of the time since starting school, also.  Her main activity lately is what you might call close watching of two movies---"Coco" and "The Emperor's New Groove".  She watches them both at least once a day, and seems to have memorized them.  She remembers right where she left off if interrupted, and recites the scene she is about to see when she goes back to watch.  As with so many of the things Janey likes, we agree with her taste.  Coco is a fantastic movie, all about music and (this struck me the other day) the power of music to reach those who might not talk much, in this case the title character of the movie, Coco, who is the main character's great-grandmother, who has dementia.  The Emperor's New Groove is just plain funny, and Janey seems to appreciate the humor a lot.  As she got ready to watch it just now, she recited the beginning "I was the nicest guy on earth and they ruined my life for no reason!"  After school earlier, she spent about an hour with nothing on, no TV or music, happily reciting lines from the movies and singing song clips.  I love listening to her do that.  I know it's echolalia, but it's not the kind of echolalia she used to do more of, frantic and unable to stop sounding.  This echolalia is very varied, and seems to just be thinking aloud, a stream of consciousness recitation of what's in her head.  Every now and then, there's a line I think is from school.."Can you guys please come over to the kitchen?" or things like that.

A few weeks ago, my parents visited, and I could tell at one point Janey was in the exact rare mood to show my father something he hadn't seen before, Janey's flash card abilities.  I held up a big pile of picture flash cards, one after the other, and said "this is a...." and she named what was on the card.  ALL of the cards.  The few she got wrong were close guesses, like calling a fox a dog or a tiger a lion.  There were words in there I wasn't sure she knew at all, but she did.  My father was surprised and impressed.

I've been reading more about RPM (rapid prompting method) and it seems like what Janey will sometimes do with the flash cards is similar to what kids do in RPM sessions, from what I can see.  I have to ask rapidly what's on the cards, I have to move right away to the next one.  It almost feels like magic---the way to glimpse what is in Janey's mind that for whatever reason she can't usually tell me.  But it also seems to have the limitations I've heard several people mention about RPM.  It's not really a skill that carries over much into every day life, at least in terms of what Janey readily says.  The words she uses for the cards are not words that are really part of her limited regular vocabulary, and I am not sure how I can make them part of it.  It seems like a lot of the value of the cards is to help people understand Janey's mind, to show she knows more than it might appear. But if she wasn't in the mood for doing it, she just wouldn't, and I wouldn't be able to push her to do so, even if I were so inclined, which I'm not.  I wish, as I have wished for so many years, that I better understood Janey's mind.

On a personal note, I was finally officially diagnosed this past week with Sjogren's Syndrome, an autoimmune disease that among other things causes one's eyes and ears to be extremely dry, and also causes severe fatigue.  I've had the symptoms for a while, and a new rheumatologist I'm seeing gave the official name to it, although it's been tossed around as likely for years.  I mention this for a few reasons.  One is curiosity if anyone else out there has the autism/autoimmune disease connection, for any autoimmune diseases (I have some antibodies showing I might another more serious autoimmune condition or might get it at some point, but thankfully not now, but they all tie together quite a bit).  The other reason is just, well, sort of to talk about how a child's autism interacts with a parent's own health issues.  My tiredness, which at times have made it so hard staying awake when Janey needed me awake that it's part of why Tony retired as soon as he was able to, has along the years made this journey with Janey a bit tougher.  There isn't a cure for Sjogren's, but I am glad to have a reason and an explanation for some of my issues.  And I hope if any of you have symptoms you might be inclined to dismiss as just being part of the stress and tiredness that comes along with special needs parenting, you will seek out a medical opinion and keep trying to get answers.  It took me a LONG time to get really proactive about my own health.

I've rambled here, I'm sure partly because it's 1:20 in the morning and Janey is still going strong, but as always, I've enjoyed virtually talking with you, my friends, my sisters and brothers by means of our shared challenges and joys in life.

The Dance!

Last Thursday night, Janey's school had a dance for the junior high school students.  Her teacher encouraged me to take Janey to it, and I decided to.  If there is anything in this world Janey enjoys doing, it's dancing.  It combines jumping around and music and laughing, all favorites of her.  And she's good at it.  She picks up moves from watching dancers on TV, or just figures them out on her own.  She's approximately 1000% better a dancer than I ever was.

Janey and her wonderful teacher at the dance

I tried to dress Janey up more for the dance, but she knew what she wanted.  She was happy to wear a dress (the one she wanted was probably too short for school, but she let me put a skirt under it), but she drew the line at fancy shoes.  She wanted her old, dirty Crocs, and I gave in.  I tried to get her to wear a necklace, and put all kinds of them on her to try, but she wasn't interested.  The aide at school that does Janey's hair much better than I can almost every day did a nice 'do for her, and Janey left part of it in at home after school, but she won't let me put in any fancy barrettes or anything.  So---basically she was like most teens would be when their mother tried to tell them what to wear.

Tony and I got Janey to the dance right on time, and found that most of her class was already there too!  That was great.  A girl in Janey's class greeted her, looking lovely, and it was a lot of fun once we got into the gym to see other of her classmates all dressed up.  This dance was for all the junior high kids, not just those with autism, and gradually more of the regular ed kids came too.  They had a supper, one that usually Janey would love (pizza, chips and soda!) but Janey was not in the mood to eat.  She was in the mood to DANCE!  She danced from the second we got in the room.

Tony and I had pretty much decided to sit on the sidelines and be ready to get Janey if she got ready to go.  The dance was from 6-8:30, and Janey generally goes to bed around 7 or 7:30, so we weren't sure how long she'd last.  But Janey came up to us after only about 20 minutes and said "Want to go away?"---pushing me toward the door.  I got the message loud and clear---we were cramping her style.  I don't know if she noticed the other kids mostly didn't have parents with them, or if it was just her usual dislike of her separate worlds of school and home mixing.  I asked her teacher if it was okay for us to go sit in our car in the parking lot, where she could text us as soon as Janey had had enough, and she said sure.  I adore her teacher!  She is so upbeat and looked so happy to just be there with her students.  Special ed teachers are some of the most amazing people on this earth.

Janey joyfully dancing!

Tony and I barely knew what to do alone in the car.  We played with our phones, talked, napped and marveled at the time going by without a call.  Finally, at around 8, Tony went in to get Janey or at least see how she was going.  Just as he got out, I got a text from her teacher that she was ready to go.  She had danced for 2 hours straight, and Tony said they told her that she got upset at one point when the DJ took a break, so they had to put on some more music!  She was so happy in the car going home, and she certainly slept well!

The dance is a perfect example of the kind of inclusion I wish there was much, much more of.  It's a "regular" event, something kids of Janey's age do, and including Janey and her classmates did involve I'm sure some extra supervision and planning, but it worked.  I think many more events could be make accessible like this one.  If Janey had someone to keep an eye on her and give her a break when she needed it, she could do many things---go to camp, go in the city and hang out, go to concerts, be part of teams---lots of things.  And I think it would cost less money and resources than it would to set up "special needs" events. It would benefit kids like Janey, and it would benefit the other kids, in seeing that Janey and others like her are not that different than them. 

You might say---why don't we as parents just take her to all those things?  Well, a couple reasons.  One, Janey showed herself at the dance.  When you were in your teens, would you have wanted your parents with you at all times?  Unless you are quite unusual, probably not.  And...we are tired.  Every single moment that Janey isn't in school, she is with us.  Always.  Tony and I getting to just sit in that car---it's the most time we've had alone in a LONG time.

Thank you to Janey's school for holding the dance, to her teacher and her aides for being there, and to Janey---for delighting us with her dancing, her enthusiasm and her joy.

Janey is Thirteen

Janey is officially a teenager.  Her birthday was on Wednesday.

Janey blowing out candles

I've been having a bit of a hard time with this birthday.  The day itself went well.  It went well mostly because we didn't really do anything for it.  That was a conscious decision.  Janey's birthdays have a checkered past.  She doesn't like things to be different.  She hates wrapped presents.  She is unpredictable with gatherings---once in a while, she is okay with them, but more often, gathering around and singing and candles and so on upset her.  My wonderful friend Maryellen, who was present at Janey's birth, made her a cake and had us over last weekend and we had candles and a sing then, so I let that be the cake of the day.  On the actual birthday, we had no cake, no presents, no ceremonies, and I think Janey enjoyed her birthday more than she has almost any other year.

Janey on her birthday morning

Some of you might know that Janey's birthday is also her older brother Freddy's birthday.  Janey was born on his 7th birthday.  That gave the day a weird distinction.  From 6 in the morning until 4 in the afternoon, I had no teenager in the house, in the middle of an otherwise unbroken 17 year stretch with one.  Freddy prefers very little birthday ritual too, so his 20th birthday, shared with his sister, was also low-key.  The one ritual we did enjoy, though, is a family dance to the unofficial official birthday song of their shared birthday, "Birthday" by the Beatles, the only song I know that talks about a shared birthday.  We all danced to it, and I have to admit I was crying during much of the dance, a poignant kind of crying.

Janey and her brother Freddy

The way we passed the birthday reflects two sides of my feelings about Janey turning 13.  On one hand, I feel like we've somehow passed some kind of barrier.  We know Janey.  It's taken a long time to really know her, but I think we do now.  We knew what she would like on her day.  She liked having lots of bacon made by Daddy, a trip to McDonalds to get Freddy a birthday breakfast and Janey hash browns, another trip to McDonalds right at 10:30, the minute they started serving lunch
, to get her nuggets and fries, lots of videos, lots of snuggling, lots of music and car rides.  We know Janey well enough now to be able to give her the kind of day she loves, without trying to make it the kind of day I picture a girl's 13th birthday being.

However, the day to me also felt strangely like some kind of deadline.  I wasn't anticipating feeling this, but I did.  I think of myself at 13.  That was the year I entered high school.  I can picture myself very clearly that year, and although of course there were many life happenings far ahead of me still then, in a very real way I haven't changed.  I was me---the me I still am.  And Janey is Janey, the Janey she is now and will be.  And the birthday reflected that Janey.  She might or might not have understood it was her birthday.  She did not have friends over---she has no friends.  She didn't long for some special teenager present, like a phone.  It is not in her realm of knowledge to even know she could want something like that.  She didn't sign up for Facebook, as I remember Maryellen's daughter Julia eagerly doing on her 13th birthday.  She doesn't know what Facebook is.  I picture her life as a line that at junctures like this birthday takes a different route than most life lines.  It is, in a computer word Freddy has taught me, a hard fork, one that is never coming back to the main line.

When I think back on this birthday, I hope what I remember is all of us dancing to the Beatles, laughing and clapping and singing in a way that no only includes Janey, but celebrates her.  And my wish for her is a life full of moments like that, shining moments in her own personal life story.

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!

The Wedding

On Saturday, I was part of a very special wedding.  I was the matron of honor for my dear friend Julie as she married Craig.  These was a love story that started 37 years ago, when Julie and Craig (and I) started high school.  They both right away developed huge crushes on each other, but never dated.  Life and the ups and downs and highs and lows happened, and then they reconnected and fell in love.  I am so happy for them both.

Julie, her mother and her dog--all lovely!

Being part of their wedding was something that a few years ago, I couldn't have done.  I am so glad that Janey is at a place now that I could.  Still, I was a bit worried how it all would go.  I went up to Maine last Wednesday, so Tony had Janey alone for a few days.  He came up Friday, as did the boys, and we all went to a pre-wedding party on Friday night.  Julie and Craig were married just after dawn on Saturday (the rest of the family didn't get up for that part, but I was there, and actually flew into the ceremony, held on pontoon boats in the middle of a lake, on a sea plane with Julie---the first time I've flown in 30 years, and yes, I was terrified, but it was an amazing ride and a huge surprise to everyone waiting to see how Julie was going to get to the ceremony!) Then the reception was Saturday afternoon, at a lovely converted barn in the country.  So there was a lot for Janey to be part of and a lot for Tony, especially, and the boys to help her through, as I wasn't available a lot of the time.

Janey dancing with the best man

How did it go?  It went very well!  Overall, it was fantastic.  A huge part of that was the extreme kindness of everyone toward Janey.  Maine's slogan is "The Way Life Should Be".  Being from Maine, I know that there are parts of life there, like anywhere else, that are not the way life should be, but in terms of how Janey was welcomed---it was the way I'd like life to be for her.  She wasn't just tolerated, she was welcomed and included and delighted in.  I can't even think about it without tears.  At the party Friday night, the older brother of a high school friend taught her a cheer and showed her the lobsters that were going to be cooked and tried to get her to try a steamed clam.  A friend and employee of Julie's danced with her and showed her how to waltz.  Julie's nieces all made a point to talk to her.  At the reception, I can't even say how many people danced with her, talked with her, asked me about her and just plain made us all feel so welcome.  

Janey on the dance floor--her favorite place!

I have been lucky in that rarely has Janey been treated badly by the public, but there's a difference between not being treated badly and being truly included and befriended.  It's one thing to not stare, to tolerate, and a fully other thing to seek out a child like Janey, to see what makes her happy, to go into her world.  That is what I wish there was much more of in this world---not tolerance, but true inclusion.

Freddy and Janey taking a walk at the reception

Of course, every day isn't a party or wedding.  The reception was like a perfect storm for Janey, especially in that there was dancing!  Janey didn't want to leave the dance for, literally.  She screamed and pulled back when those dancing with her tried to take short breaks!  Tony and Freddy danced with her for LONG periods!  I never knew my husband and son could cut it up quite that well.  William and Freddy took Janey for lots of walks when she wasn't dancing, so Tony could truly enjoy himself at the reception too.  I was never prouder of my boys.  So many people commented on how good they are with Janey.

A rare picture of my whole family and my parents

Now---back to reality.  It's the few weeks before school starts.  It seems from Facebook like everyone else in the world is already back to school, but Janey doesn't start until the Thursday after Labor Day, so we have some time to fill.  It wasn't a bad summer, overall.  Summer school went well, we had the great trip to Ohio and this great past weekend.  Even so, I am always ready for school to start in earnest!

I'll close with many, many good wishes and lots of love to Julie and Craig, and to everyone who was so kind to us this past weekend!

On Awareness/Acceptance/Whatever

Other years, I've tried to write a post about Autism Awareness/Acceptance Day/Month.  This year, I wasn't going to.  This is partly because the whole idea of an autism day or month seems to be very controversial, and I am not much into controversy.  For those who might not get why it would be controversial---from what I understand, Autism Awareness Month and the whole Light It Up Blue campaign was a brainchild of Autism Speaks.  Autism Speaks is not a well-liked organization with autism circles.  There's a variety of reasons, the big ones being that they portray autism very negatively often, and that they give very, very little money to actual help those with autism---most all their money goes to administration or to research.  They also haven't been too interested in having people with autism on their boards.  I would tend to feel these are pretty valid criticisms.  However, I know that most people who do things for autism awareness, like wearing blue or putting up blue lights, have no idea what the history behind it is.  I believe in taking gestures in the spirit in which they are given, and so I don't get that upset over all of it.

However, the other reason I'm not trying to write an autism awareness/acceptance post is that I more and more realize I am not aware of autism in general. Very few people are.  I am aware of one child, Janey, with autism.  And autism is only a part of her.  I can't take anything about her and generalize it to the larger autism world.  She is herself.  I can and do and will write about her, my daughter, and the joys and struggles involved in raising her, and I am happy if that helps others raising children with autism and if it helps others better understand what it's like, in my particular case, to raise a child with special needs.

Several times lately, I've seen writing about how in many ways, there truly is more awareness of autism than there was in the past.  I've noticed this.  When Janey breaks down in public, or when she doesn't answer someone who talks to her, or when she shows her unusual behaviors, I often am quick to say "She is autistic"  I do this partly to fend off those who might think she is misbehaving, and partly to do my own little part for awareness.  More and more, though, I get the response "Oh, I knew she was".  People are more aware than I'd say they were even five years ago of what autism can sometimes look like.

My hope is that there is a progression with issues like autism.  First, people become aware of it.  Then, they are open to helping with it, and open to government and schools and cities spending money to help people with autism.  You need to be aware of what is needed before you can understand why you need to give that help.  That is part of why I write here.  It's easier a lot of times to relate to one particular child than to a concept in the abstract.  I want to do my small part to make people aware of one child with autism.  I don't speak for anyone but Janey and our family, but in telling our story, if people become more aware of autism in general, I consider it a plus.

How did we spend our special autism day?  We had a good, quiet day.  Janey was quite happy all day (and all weekend).  She watched videos, played with her iPad, ate a lot and danced to music.  We took a couple car rides, including a long one to Dairy Queen (the closest one to us is a ways away) and she had chicken and french fries while we rocked to her car music.  There was of course a bit of screaming here and there, a little bit of arm biting, but a lot of happiness and laughter, too.  Janey, you have made me aware of autism.  You have led me to accept autism.  And I love you.

Realistic Dreaming vs. Giving Up

Lately I've been thinking a lot about how my vision of Janey's future affects her, and affects how we spend our time with her.  I've been doing a little soul-searching.  Am I selling Janey short by how I envision her future?

After a lot of thought, I actually for once cut myself a break and decided---no, I'm not.  To show my reasoning, a little analogy.  Say I bought a Power Ball ticket (which I don't, but I could of!)  It would be fine to dream about how life would be if I won.  I could picture the house I'd buy, the charities I'd support, the trips I'd take---I could very much enjoy the thoughts.  And it's true that it's POSSIBLE I'd win.  It wouldn't be likely, not at all likely, but it's not impossible.  There's nothing wrong with that kind of dreaming.  However, what if I decided to live life assuming I WOULD win the lottery?  What if I put a down payment on a huge house, if I booked passage on a cruise, if I bought myself a bunch of fancy clothes for the charity galas I soon would be attending?  Most people would agree that wouldn't be the best course of action.

I dream that Janey will somehow learn to read, that she will finish high school, that she will go to college, that she will have a family, that she will live on her own.  I dream those things for her all the time.  I am open to those dreams coming true.  However, Janey is ten.  She can't read, she isn't toilet trained, she can't really have a conversation...in any measure, she is severely intellectually delayed.  She also show a lot of very difficult behaviors, enough so that she last year spent time in a psychiatric hospital.  Of course, there are not exact odds for life outcomes, because there are too many variables.  But if we looked at 100 ten year olds with that general profile, I'd be surprised if even one of the 100 accomplished the things on my dream list for Janey.  If Janey were four instead of ten, the odds would be hugely different.  Many, many four year olds with profiles like Janey go on to do many of the things on my list.  Quite a few six years also do.  But as the years go by, the numbers get smaller.

Does this mean I'm giving up on Janey?  Not in any way.  It means I am using reasonable odds to decide where to put our time and resources.  Janey's time, her time RIGHT NOW, is valuable.  Another analogy---Picture a couple that wants to have a very comfortable retirement.  In fact, they are obsessed with saving for retirement.  As their children are growing up, they pass up many, many chances for fun with the kids because it would use money that needs to be saved for retirement.  They don't eat out.  They don't take vacations.  They don't have reliable cars.  They don't spend a cent they don't need to.  And yes, they have plenty of money when it comes retirement time, but I would say they have missed a huge amount in doing so.  They have lived many years not enjoying the right now.

When I have time to spend with Janey, how should I spend it?  Janey has been in school for eight years now.  She can't name letters.  She can't add simple sums.  She can't reliably identify shapes or colors.  When we have a block of time with her, does it make sense to work on those skills, taking into consideration that the odds are very, very low she's ever hold a job that requires those skills, and that so much time has already been put into trying to teach her those skills?  I would say no.

Instead, I choose to invest in the now.  Lately, when Janey gets home from school, we spend time together listening to a cool on-line station I have found, one that plays nothing but Casey Kasem countdowns from the 70s and 80s.  I love the stories behind the songs Casey tells, and Janey loves much of the music.  She dances her amazing dances, she learns the songs at an amazing rate, we have quite a time of it.  When she hears a song she hates, she turns off the music and we move on.  But while the time lasts, I'd say it's time extremely well spent.  Janey is having fun, I am having fun, and she is actually learning things that will help her enjoy her future---more songs, more types of music, the things that have been demonstrated over and over are her strengths and her joy.

My dreams for Janey, my dreams that I think truly can come true?  That she have a meaningful life---one with joys and interests and respect from those around her.  Success isn't the same for everyone.  I think being realistic about what Janey's future might be like is not giving up.  It's actually opening up a huge amount of time in the now, and letting us work on a future that respects who she actually is.

Third post of the day!

I've never written three posts in a day before now, and I don't think I ever will again, but I wanted to write about visiting Janey at Bradley Hospital while it was fresh in my mind.  I'm blogging lately for myself as much as anyone, to remember these eventful and challenging days accurately.

The couple pictures here are ones I found on the internet of Bradley.  You can't take pictures there yourself.  The room looks very similar to the common room of the ward Janey is on.  I'm not sure it's the exact same ward, but you can get an idea how nice it is.

We called this morning to make a time to meet with the staff at the hospital, and agreed on 11 am.  We left about 10, thinking the drive was an hour, but it was actually more like an hour and 15 minutes, which was fine, but good to know for the future.  It's a pretty drive at the end, through Providence, a city I've never spent much time in, although both my parents and my sister have lived there at points in their life.  It's great the hospital is south of Boston instead of north of it, as that avoids the horrible traffic that driving through the city always involves.

When we got to the hospital, we had to show ID at the main desk and wait for someone to come get us.  Everything is very, very secure there, which we don't mind at all.  It was striking at Boston Children's Hospital how very UN-secure everything was.  It was only on the weekend you had to show any kind of visitor's badge at all.  Anyone could walk into any room there pretty much unchallenged.  But at Bradley, that would not happen.

The social worker assigned to us came to get us, and we went into a meeting room.  There we talked for a long time to quite a few people---the psychiatrist that has been assigned to Janey, a speech therapist, an occupational therapist, someone I think was a behavior therapist and a few more people whose roles I am not sure about right now!  They asked us many, many good questions about Janey, things like what upsets her, what calms her, what her speech is like, how her behavior has recently changed, what medications she takes, how she is at school, how her sleep and eating area---all that.  Everyone was very understanding and respectful.  The process felt unrushed, unlike anything at all at the regular hospital.

After the long talk, we went to the ward to see Janey.  We had to put our things into a locker---my pocketbook, Tony's jacket, a clipboard---you can't take much of anything in with you.  I did bring in a big bag of clothes for Janey.  Once in the ward, we had to sign in again.  And then we saw Janey!  She looked very cheerful.  There was a relaxed smile on her face we hadn't seen for several weeks.  It was wonderful to see.

The rules of visiting are that we have to visit with Janey in her room, not in the common area.  Therefore, we stayed just a minute, because I couldn't bear to have Janey shut in a room again.  She was happy being active, and it was the middle of their day there.  She was about to have arts and crafts with other kids.  So we put away her clothes, gave her a few big hugs and said goodbye.

The hospital is very strict about talking to other children.  We saw a few boys who are on the ward with Janey, but the rules are that you can greet them if they greet you, but can't talk to them otherwise.  I can see the reasons for this, although I would love to get to know other children like Janey a bit more.

We got the feeling that Janey is already winning over the staff.  They had a few cute stories to tell about her already, including how they did the "Turkey Pokey", like the "Hokey Pokey", and that Janey loved that and did an impromptu solo dance and song after it was over.  I can see Janey being very happy there.  They will keep her busy and give her attention.  I think the question will be more---will this carry over?  Will we get help and ideas and medication changes and so on that will help us once she is home?  I am going to try hard for right now not to think about that, to just be glad she is in such a great place and to try to relax at home.  This is the respite we had wanted.   Not in the way we ever wanted to get it, but I still need to use this time to regroup mentally---between drives to Rhode Island.  I am certainly going to sleep well tonight, and I hope Janey does too, a whole state away from me.

Better days, and insights

Thank goodness, the last few days have been much better with Janey.  As so often happens with her, we have no real explanation of why she went through such a horrible period and why she came out of it, but it's great to have our happy girl back.  When she's happy like this, it's hard to even picture how bad it gets when she is so sad.  She hasn't bitten her arm in days (again, knock on wood!) and yesterday she only cried once, for just a minute.  It's been lovely.

I've had a few insights about Janey lately, probably due to thinking about her so much in trying to figure out what makes her happy or sad.  One is how very, very VERY active she is.  She is non-stop movement.  In that way she is very much like Tony, and like my mother.  She doesn't rest---she is constantly jumping, running around, asking for things, wanting to be on the go.  I don't think this is her autism; I think it's just her. The medication she is taking almost always makes kids gain weight, but weight doesn't have a chance on Janey.  Janey was like that from the start.  When I was pregnant with her, a tough troubled pregnancy, I never worried about her being still okay, as she kicked CONSTANTLY.  I used to wonder about whether she ever slept in there.  My boys were not like that, and are not like that.  They are more like me---prone to long stretches of not doing much active.  I realize that this drive to move affects her mood.  She needs to keep on the go, and when we can't, it makes her crazy.  I am very glad Tony understands this.  He instinctively knows when she needs to go outside, to get out of the houses, to do something with movement.  It also explains a little her lack of interest in books and reading.  More and more, we do think she can read, but she doesn't sit down and read, nor does Tony, although he was a great student and an Ivy League graduate.  Reading is too passive for either of them.  Here's a picture of Janey in her usual mode, running and jumping.

The other insight I had is how Janey not only memorizes words and music, but movements and body positions.  This came to me during one of my Total Janey Time attempts.  After school, I went into the backyard with her where we had her wading pool set up.  The day before, I had gotten into the pool with her, and she sat on my lap and played with pool toys.  That day was very hot, but this next day was very cool, but Janey was determined I sit in the pool with her again.  In the spirit of Total Janey Time, I did.  Once in there, Janey kept adjusting where my legs were with her hands, and moving my arms, and pushing me to the "right" part of the pool.  I realized she wanted to completely recreate the day before, and she had a complete memory of how we were sitting that day.  This is something I remember Janey doing way, way back, once I thought about it.  Her first year is often a blur in my mind, but I recalled playing with her at 10 months or so and having her put my hands in different positions, wanting me to play in a certain way that I realized was how we had played previously.  The insight also explains Janey's amazing ability to dance.  She channels any dancer she's seen---copying their moves exactly.  That's probably what led to the most amazing moment pretty much of Janey's life and ours---that day Michael Jackson died, when we put on some of his music and she danced EXACTLY as he did.  I think now she must have at some point seem Billie Jean being danced to, and recalled it exactly.  It must be hard having this kind of recall, because other people don't remember exactly how they moved previously.  I wonder if that causes a lot of Janey's tantrums.  She remembers a good time, tries to get another person to recreate it, and they just can't, and she doesn't know how to explain what she wants them to do.

Here's hoping Janey's good times keep up for a long time, and that I keep figuring her out, a little bit at a time.

My delightful girl

Every now and then, there is a moment with Janey that just couldn't be better.  Those moments aren't the breakthrough moments, when she does something unexpected, necessarily.  They are moments when she's herself, her autistic self, but does something, little or big, that makes us realize that in a lot of ways, she's a dream girl.

Today we had one of the little great moments.  Janey came up to Tony and me and said "I want burgers".  She loves Tony to make hamburgers.  She's not into the bun or anything, just the plain burger.  Tony had plans to go to the store right about then anyway, so he said "Daddy will get you burgers.  Let's go to the store!"  Janey smiled that huge smile, the smile that can melt away the memories of hours of screaming and mischief and it all, and screamed out in glee  "Daddy will get you BURGERS!"  Then she started literally dancing around in sheer happiness.

Tony and I both got hit hard by how wonderful it is when she's like that, when she's just plain happy, and happy with small things.  He said "This is when she has it all over a lot of 8 year olds.  They'd be at the age where they'd say something like 'I don't want STORE burgers!  I want McDonalds!  No, I want to go to Outback Steakhouse!  I don't want to go to the store with you!  I am hungry now!' and all that"  Of course they wouldn't every single time, but we've had a couple of 8 year olds, and that can be a tough age, when they realize parents are far from perfect and are full of ideas to make them more perfect.  Janey doesn't have that.  She's often not happy, of course, but it's not a calculating not happy.  And when she is happy, it's happiness in a pure delight form.

There's always that mean voice in my head, the voice of reason or of "don't get so excited" or whatever it might be, the voice that says somehow I shouldn't be happy about little moments like that---that I'm somehow selling her short to just be happy when she's happy, that I'm lowering my expectations, that I'm taking joy in what is her being younger acting than her age---all kinds of thoughts.  And to that I say---shut up, voice of reason.  I have a right to delight in Janey at times.  I certainly have my share of times I don't delight in her.  I don't belittle the impact her autism has on her.  But accepting the great moments is not embracing the autism.  It's embracing my delightful little girl, my sweetheart, the girl that sometimes is exactly the dream girl that Tony and I dreamt of so long.  We love you, Janey.

The inclusion school show

Today was a show at Janey's school.  Her school emphasizes the arts, so they have a lot of shows, with lots of dancing and singing.  I love Janey getting to participate in these areas, but I have to admit, the shows are tough for me.  Although Janey can sing and dance, she certainly doesn't, on stage.  I've heard sometimes she does in rehersal, but once she's actually up there, the best I can hope for is her not crying or throwing a fit.  She didn't today---she stood there, with the help of her wonderful aide Ms.. Clemmons, next to her friend Jaden, and although she looked slightly dazed, she was up there with the rest.  Here is a picture of her.  She and Jaden are holding teddy bears.  It's a song where the other kids are doing hand movements, and I liked a lot that Janey had the bear to hold.  It made it a lot less obvious that she wasn't doing the movements along with the rest.  In this picture, it even looks like she's doing a half clap.

There are a lot of amazing kids in her class and school.  Of course, I count Janey as one of them.  But today I was thinking about the other side of inclusion---the kids without disabilities.  I truly feel they too benefit greatly from having Janey, and Jadon, and the other kids with disabilities around them, as much as Janey benefits from being around them, and maybe more.  And if I go to the shows, or to classroom events, and feel depressed Janey isn't doing what they can do, that's missing the point.  I am watching them learn, as I am watching Janey learn.  I want Janey to be in the real world, the world with kids that have all kinds of levels of achievement.  Freddy thrived in that world.  Although we didn't know it, we were preparing him for Janey, but besides that, he met some great kids.  Last night, he talked for a long time on the phone to a former classmate of his, a boy with what I would guess is high-functioning autism.  I said something to Freddy like I was proud he had kept in touch with that friend, and he said "Why wouldn't I?  He's very cool"  When an inclusion school works perfectly, which it doesn't always do, of course, it creates a community of parents that care for not only their own children but the children their kids go to school with.  I want to have a heart that can delight in the accomplishments of all the kids in Janey's class.  I'm not quite there yet.  It's hard.  The pictures below show what I mean, a little.  Janey is there.  She is part of it all, but she also isn't.  She can't be, totally.  I love it that she is included.  It means a huge amount to me.  I love the adults that find ways to include her.  I love it that her classroom teachers, when finding out I was going to the afternoon show and not the morning, knowing that Janey would not tolerate more than one show well in a day, played with her during the morning show instead of having her go on and not be up to the afternoon show.  That is the kind of adjustment, of caring and understanding Janey, that happens all day and allows her to be both herself, a child with low functioning autism, and also part of her class, a class of cool, smart, interesting kids.  And it's why I go to the shows---not so much for Janey, but for her class as a whole, the class she is part of.

The fun parts

Lest Janey's recent mischief-filled days overshadow the fun that is Janey, here's a few of the cool moments from recent times----

Janey's enthusiasm for going places---any places pretty much. Last night we had to go out in the evening to pick up the boys from a teen night at a museum. Janey saw it was getting dark out and we were getting her ready to go out, and she was overcome with delight. A car ride? At night? It was like we'd given her a million dollars.

Her growing abilities to figure out electronic devices. The other day, I heard music coming from the iPad that I didn't recognize. I watched Janey playing, and saw she had somehow figured out how to go to a game I play and click a long series of buttons to get to a place where you could watch preview videos for other games, and was enjoying some kind of Barbie Fashion video. I was amazed. She can also now turn on the TV, go to Netflix, pick a show and pick an episode. This is the girl that the technology person for the Boston Public Schools said would "maybe" be able to operate a one button speech device.

Her dancing. She has started watching "Yo Gabba Gabba", which is a weird but dance-intensive show. She follows the moves shown closely, and imitates them very well.

Her ever-evolving tastes in music. She now stops me often when I play songs in the car and says "I like that! I want...(name of song)" Yesterday it was "Hey Nineteen", a song I love, and we listened to it happily together 4 times. Her tastes are pretty eclectic, though---the other day it was "Phantom 309", a creepy ghost story trucker song done by Red Sovine.

Her ability to stay on topic, but mix it up. This mostly relates to her new love of getting Happy Meals at McDonalds or Burger King. When she wants one, she thinks of about a hundred ways to ask for one, as if we just aren't getting her the first time "I want Old McDonald!" "I want fries OR nuggets!" "I want go to the drive-through" "Old McDonald had a farm, and on that farm he had some CHICKENS!" and of course the old faithful "I want McDonalds NOW NOW NOW NOW NOW" She doesn't seem to get that discouraged if we say no repeatedly---that's part of the fun of the hunt for her.

Her growing relationship with her brothers. She puts on a different Janey when she is with them---a pesty little sister Janey. The other day in the car, she and Freddy were exchanging pokes and nasty looks and yells---something I would be tired of if it had happened for years now, but it's new, at least having her an active participant and seeming to enjoy the game.

There's many more. I get so tired and discouraged some days I think I portray Janey in too negative a light. There are many times a day she delights us---sometimes through our tears of frustration, but still, she is amazing in a lot of ways.

J is for Janey

This is a picture of Janey's Mother's Day letter to me from school. Her special ed teacher told me this morning that she gave Janey choices in writing it for her, like asking her "Do you like listening to music with Mama or cooking with Mama?" and Janey answered her right away and nice and loudly and clearly, not whispering as she sometimes does lately. That was special enough to hear, but the "J" signature was a wonderful, wonderful surprise for me. I burst into tears of happiness when I saw it. I knew they had been working with Janey on writing a J as a signature, but to actually see it there---wow. There's something about it that is very symbolically special to me. It's like Janey saying "I am here! I did this!" I know I'll treasure that letter forever. Thank you, Jen and Christine!

Earlier in the day, Janey's class had a publishing party, where kids present their writing. It was done this year as a movie, which was very neat to see. It's amazing what kids accomplish during 1st grade. They go in not knowing how to read, and come out able to read and write. Of course, not Janey, but for some reason today, although I braced myself for it to bother me to see, it didn't at all. Janey was in the movie, and she did her best. She finished sentences about what she likes to do. All the kids did their best, and they all were amazing.

The best part of the movie was at the end. The whole class was dancing in a circle. Janey was right in there with them. She wasn't any different than any of the other kids, except for being (in my biased eyes, admittedly!) the best dancer. Then there was a shot of two other girls and her dancing. She was so, so happy, and the other girls looked happy to be with her. Janey was in her element---music and moving around. Those dancing scenes were inclusion at its best. Tony took a movie of the movie, and I will love seeing that scene for the rest of my life---Janey dancing with joy, part of the group but also her own amazing self.

Good times

I had some great times with Janey the past few days. I feel like we really were connecting, after feeling for a while like she liked everyone else better than Mama! The other night, Tony was working out with the ski machine, so I took her into the bathroom to keep her out of his way. There was a big My Little Pony in there, an oversized one. She showed an interest so I ran with it, and we gave the pony a bath and shampoo. Then we played with him (her?) for such a long time! Janey was really playing some nice pretend play and we both were having fun. She told me to kiss the pony, and actually held it up to my lips and said "MAH" like a kiss. Then today I was playing show tunes on the TV, one of the music channels, and they played "Let's Go Fly A Kite" She was in the sunlight and started to dance to it, her wonderful dancing which she must have gotten from her grandfather Amara as I sure can't dance and Tony doesn't much either. I got up and danced and sang with her, in the light, and it just felt like one of those perfect moments, like at the end of a movie or tv show when the music swells and you get that Happily Ever After moment. I have to remember moments like that. I love her so much just the way she is---she is an amazing girl---beautiful, creative, graceful, endless fascinating. Certainly challenging, but also just an amazing daughter.