Frustration with the schools (not the teachers!)

 Over the years, I've been a big cheerleader for the Boston Public Schools.  I am a fan of public schools in general, and I've always tried to let people know it's very possible to get a very good education in Boston without feeling like you have to send your child to private school or you have to move out of the city.  For those of you not in Boston or near it, the Boston schools don't have the greatest reputation.  I've felt for many years that poor reputation is not justified.  My three children, all very different from each other, have been for the most part well served in Boston.  

My feelings haven't changed when it comes to the teachers, or the therapists, or the paraprofessionals, or the principals.  I can truly say in all my years, which add up to 23 years now, of having my children educated in Boston, I've only encountered two or three teachers, out of literally hundreds, that I would not happily have teach my child again.  Indeed, I've had far more than my fair share of absolutely amazing teachers, of therapists that care deeply, of paraprofessionals that I would trust with my children's lives without a second thought, of principals that took a personal interest in my kids.  

But the school system in general?  The upper management, the central office, the bureaucracy?  Well, I'm not too happy with them.

Nobody can be blamed for COVID-19 existing.  It's a virus.  You can't be angry at a virus.  But I am angry at how the whole crisis has been handled in Boston, quite angry really.

I've talked through Facebook and by phone to many, many other parents in other parts of the US and world, and overall, it seems like most school districts are finding a way to educate kids like Janey.  At the very least, most districts seem to have used the summer to make plans, to find a way to  bring the kids that just don't learn well at home into the schools as safely as possible.  Some parents have chosen to keep their kids home anyway, and that is certainly understandable.

Technically, we were given a choice with Janey---remote learning or a hybrid method, 2 days a week at school.  But after talking to her teacher and hearing what those two days a week would be like...wow.  They would be in one room, with masks on, never leaving the room, teachers not allowed to touch the kids at all, much of the teaching taking place by Zoom meeting even in the room, as teachers would not be circulating. That isn't a classroom model that would work in any way for Janey, or for most kids with autism.  So we chose home education.  Janey's amazing teacher understood that Zoom meetings don't work for her, and she is going to provide us with weekly materials (which she had to do a funding drive to get money for---no thanks to Boston there) to teach Janey with.  

Janey's room at school has no opening windows, none at all.  She rides a bus for an hour each way to school and back.  She will wear a mask for short times, but I'm quite sure she wouldn't leave one on all day.  She lives for walking around the school, for field trips and swimming and dance.  It would be both unsafe and deeply unsatisfying for Janey to go to school as it has been set up.

I attended a big Zoom meeting for Boston parents of special needs kids.  I won't go into it in detail, but it was awful.  A politician was allowed to grandstand for a long time, an ABA specialist took up a long period of time during a meeting meant for PARENTS to ask questions (she had good ideas, but at least 50 parents had questions that there was no time to answer during the too short meeting), and most disturbing to me, a school official outright lied.  He was asked (several times) if teachers were going to be given adequate PPE (personal protective equipment, like masks, shields, etc.)   He said emphatically "Yes!  Absolutely!"  Well, as of last week, I have been told that such equipment is not only not being given to teachers, it hasn't even been ordered.

Even if we had chosen to send Janey to school, school isn't starting in person until October 1st, or at all, even remotely, for another two weeks.  I don't see any other district anyway that isn't even having any school this September, basically.  The schools had all summer to prepare.  This didn't all come out of no-where.  But from what I can see, infighting and attempting to please every politically powerful faction took up the time that should have been spent on one big goal---finding a way to safely educate the kids of Boston.

I know that the powers that be would argue they just can't find a way to safely educate Janey and her peers.  But I wonder---why, elsewhere around the country and around the world, are so many other kids like her back in classrooms already, safely, with teachers that have the equipment they need to be safe, with classrooms that are ventilated, with few enough kids in a room for it to be safe, without a mask requirement for children whose special needs just make it impossible for them to understand why they need to keep a mask on?  

Boston school buildings are underutilized.  Janey's high school has a population far, far smaller than the school was built to hold.  All the time, attempts are made to close some of Boston's 125 school buildings.  Surely, somewhere in the city, there are enough classrooms for kids like Janey, the highest need students, to safely attend school, and surely, there are enough teachers that, if given the proper tools, would feel safe teaching the classes.  I don't want any teacher that doesn't feel safe or supported to teach.  Many teachers have small children, or medical conditions, or the like.  But if only teachers who felt safe teaching were to teach the high needs kids, as is happening what seems like virtually everywhere else, and if Boston could be flexible and open classrooms in buildings that have good air circulation and opening windows, even if that required Janey and others to temporarily go to a different school---well, you would really think a city like Boston could do that.  And you think they would be shamed by seeing that everyplace else pretty much in the world is finding a way to do what they can't seem to do.

We're fine, ourselves personally.  Janey is 16.  Although it's not what we want, truthfully she could stop going to school now and it wouldn't be a tragedy.  I was prepared to have her drop out if the schools had been rigid about Zoom meetings for her schooling.  But there are so many young kids with autism in Boston who desperately need schools.  And although we are managing, Janey is regressing in a lot of ways.  Her toilet training has been, well, set far, far back.  She is talking less much of the time, and lately, especially after seeing her teachers outside in a socially distanced meeting---which was great---she seems to be upset she's not in school.  She can't express that directly, but it's fall.  She knows fall, and she knows that is when you go to school. 

One of the things that was said at that infuriating Zoom meeting for parents, when a parent poured out her heart about how hard this all has been, and how she didn't feel equipped to teach her young child with autism, was that there are many social service agencies in Boston designed to help the special needs community, and "we are going to work with them to get services and help for kids who need it" (not the exact words, but along those lines)  I think of all of this, that makes me almost the angriest.  You are GOING to?  Why hasn't that been happening right along?  Why are there untold numbers of agencies that I know have a mission and funding to help kids like Janey, and that are I am sure are well-meaning, but that don't work with the schools, or each other, that don't ask parents what we really need, that hold endless workshops and support groups and make up nice fliers but don't provide ANY respite, ANY after school programs, ANY direct help, except maybe to a small number of people that know exactly the right way to ask for it and have the means and personality and connections to access the help?  Why can't help be OFFERED to those who truly need it?

I'm angry.  I'm angry that the overpaid, overstaffed, underworked bureaucracy of the Boston Public Schools is failing the children of Boston, and the teachers of Boston, and the everyday citizens of Boston.  I don't get angry easily, Boston.  It took me 23 years to get this angry.  But I'm angry.

Autism in the time of Coronavirus

The coronavirus pandemic is, by very definition, a worldwide crisis.  It affects everyone on earth. I always try to guard against appropriating issues that are certainly not mine alone.  That being said, there are ways this crisis is affecting those with autism, and to narrow it down more, my daughter Janey, specifically and strongly.

Of course, because everyone with autism is a unique person, and there is no one autism personality, set of skills, collection of challenges, I can only speak only for the person with autism I know best, Janey, and even then, I can speak only as her mother, not as herself.  That being said...

Janey was having, up to last week, the best year of her life, I think it's fair to say.  She loves high school.  Loves it completely, with abandon.  All reports, all pictures sent home, all signs were that she felt she'd found her place.  The time from the start of this school year until now was the longest ever almost uninterrupted stretch of happiness for Janey ever.

And suddenly, that ended.  From one day to the next, there was no more high school to go to.  We know the reasons, but I truly don't think Janey does at all.  Of course, I explained it to her.  I try to always assume competence.  I told her as best I could what was happening.  I don't know how much she understood. Being completely frank, I don't think it was much.  Janey has a pretty significant intellectual disability, and I think the idea of a worldwide pandemic is beyond her.  What she did understand is that for now, school is over.  I know she understood that, because when I told her, she screamed.  And said, over and over, "No!  No!  No!"

I am constantly thinking back to when I was Janey's age, 15.  I loved high school too.  I look at pictures of me from that time, and the smile on my face, the very cheerful look, is so much like Janey's.  I loved the mix of structure and chaos, the feeling that anything could happen, but it was going to happen within a somewhat controlled framework.  I loved being out of the house, on my own but still with a home base.  I loved being with my friends.  And, like many 15 year old girls, I was a bit boy crazy, spending hours writing in my diary about whoever I had a crush on at the time.  At Janey's IEP meeting, I loved in a lot of ways hearing about how Janey had to be reminded we don't hold hands during class.  She is one of the few girls in a cluster of classrooms full to the brim with boys, and she is not unaware of that.

And now, for reasons she doesn't get, she is home.  She is not only home, but we aren't going anyplace fun.  In her eyes, I am sure it feels like we have just decided to take away what she most enjoys.  What bothers me the most is that I think she believes that everyone else is there at school, having the time of their lives, and she is home without them.  I've tried everything I can think of to explain that isn't the case, but I don't think she gets it at all.

Janey has reacted to all of this with a huge regression.  She is biting her arm all day until it's raw looking, she is screaming often, she is crying a great deal.  She is showing behaviors we haven't seen in this intensity for a long time.  And seeing her regress, it all comes rushing back.  We as parents of a child severely affected by autism are living one tantrum away always from fear of it all going to hell in a handbasket. My mind can't help but take me to one of the worse days ever---to a hospital emergency room where Janey is biting and flinging objects and so out of control that there are suddenly police officers all over and I am being walked out out of the room so Janey can be subdued without me.  I would guess many of you have your own scene like that---the scene that the mind has a strange attraction to.

The school system in Boston is doing all they can to help kids get through this time, and as almost always, I am grateful for that.  We are taking Janey every day to pick up breakfast and lunch, a little piece of routine.  Her teacher has set up a Google classroom and today I will show Janey the videos there.  But much of what the schools can do just simply doesn't work for Janey.  The kind of work she does at school at this point really can't be reproduced at home.  We can't give her a dance class full of other kids, or a big swimming pool, or field trips with her friends.  We can't give her a long bus ride through the city, or a big staff of people who love her.  We can only give her our little staff at home, and she isn't happy about that.

For many families like our own, school is our one and only source of respite. With Janey home, that respite is over for now, and that is one of the toughest parts of this all.  Her respite from us is gone, too.  It's much easier to take a step back and work on ways to deal with this crisis when you are getting sleep, which we aren't, when you are getting some time away from the screaming and the frantic demands of a confused and unhappy child.  

Under all this, of course, is the same fear that almost everyone has, that we will get sick.  Tony is a diabetic.  I have quite a few underlying conditions.  If either of us got sick, it could be, well, pretty bad.  It evokes the black hole of fears when you have a child like Janey---the fear that you won't be there as a parent.  As my friend Michelle and I often say, and as many living this life understand, we as parents have to live forever.  The thought of us not being there for Janey....I can't even go there.

I know that not every child with autism is Janey, is like Janey.  For some kids, this break from school, this time at home, is a dream come true.  Some kids and parents will probably look back at this, assuming we get through it and all in the family are okay, as one of the best times in their life, strange to say.  And that too is part of the story of autism at this strange time in history.  

Thank goodness for the internet.  I think that all the time.  Thank goodness we can be with each other virtually.  Thank goodness for that gift from above, Disney Plus, without which right now I can't imagine life.  Thank goodness for being in contact with my autism mother friends.  Thank goodness my son William can work at home, helping to keep Tony and me safe from sickness.  Thank goodness for all that helps us not feel alone.

I would love my Facebook companion page to be a place you can vent, a place that I will do everything I can to keep as a refuge for those who need it.  

I will close with what I've noticed has become the default close in this past week.  Be well.

Nana and Grandpa at the hotel house

Janey at the cheese and cracker reception time

This past Saturday, I realized how very long it had been since Janey had seen my parents.  I last saw them in October, when I went up there for a few days, but for Janey, it had been almost a year.  They used to drive down here from Maine for the day, a drive that is almost 4 hours each way, but as they get a bit older, and after my father's accident falling from a ladder, they can't make the trip as easily.  On the spot Saturday, I decided that despite all that was keeping us from getting away, we'd go spend a couple nights in Portland, half way in-between us, and have them come down for the day to see us at our hotel (Janey always calls them "hotel houses").

Breakfast, which Janey did not care for

In general, Janey likes trips.  That is, she likes them under her own terms.  It must be her music in the car, music that she wants us to change constantly.  Once we get to the hotel, except for car rides, she doesn't want to go much of anyplace.  Going away with her is not really a get-away or a vacation as just more a change of scenery.  It's great she doesn't mind being away from home.  But it's also harder to keep her happy in a hotel.  At home, if we have to say no, she often screams.  In a hotel, you really can't have someone screaming the way Janey does.  We can't stand our ground unless we want complaints and the front desk calling us to see if everything is okay, something that has happened a few times.  So, we keep her happy.  On this trip, it meant letting her take about 10 showers, having her play her iPad at full blast on YouTube Kids with the same videos 20 times an hour, and working on keeping her calm when she woke up at 2 am the 2nd night.  It was relaxing to come home.

Janey checking out a water feature in the lobby

However, it was worth it to see my parents.  We did manage a lunch out at a buffet, sort of a more downmarket Old Country clone.  Everyone found plenty to eat.  We got pizza from the hotel restaurant at night.  We exchanged Christmas presents, which we had not been able to do any sooner, and we sang some Christmas songs---Janey's favorite part of Christmas.

My parents commented on how clearly Janey sings, in contrast to her speaking, and that made me face something I haven't faced much.  Janey used to speak very clearly, when she did speak.  She doesn't any longer.  Often, no-one can understand what she is saying but Tony and me.  I hate thinking it, but it's become pretty obvious her speech is getting worse over the years.  But the singing---still lovely.  I sang the beginning of lines from carols, and she finished them, perfectly.  Hearing her sing parts of "O Holy Night" brings tears to my eyes every time.

Janey sees Nana, as Tony looks on!

During the car ride back, Tony and I talked about some small changes we are going to make with Janey.  For about 4 years now, we have been pretty much doing whatever it takes to make her happy.  Overall, it's been a huge help in making all of us happy.  But lately, she has become more frantic in her demands, and she doesn't seem happy even when she gets what she wants.  The big thing that has become almost impossible is the music in the car.  Janey will not listening to about 95% of the songs we put on, songs she has previously liked.  She just constantly says "Music please, music!" which means change the song.  This makes it very hard for Tony to drive when he's driving alone with her, because if you DON'T immediately change the song, she screams, sometimes kicks the seat, and makes it very hard to concentrate.  We decided on a new rule.  We'll change music only after listening to the rest of whatever song we are hearing.  We explained this to her, and then put the rule in place, and after not much push-back, she seemed to get it.  She didn't like it, but she got it.

Janey listening to Grandpa!

We decided to put a similar rule in place about putting on TV shows and videos, once we got home.  Again, she wasn't pleased, but she seemed to understand.  We am always balancing her need for control with Tony's and my need for sanity.  We are all in this for the long haul, and we as parents were starting to quite frankly be at the ends of our ropes.

Being away, even for a few nights, can give some new perspectives. They aren't always easy things to face.  We need to try to figure out Janey's speech regression.  We need to take back some control of routines that have started to make our lives very tough.  We need to find a way to see my parents more, while still being around for Tony's brother, who has been in and out of the hospital for a very long time now and who has severe health issues.  We need to take a hard look at our finances, which with Tony's retirement have become much more of an issue, making even 2 nights in a hotel a luxury we can't often do.  We need to have a life that better balances Janey's needs with our own.  None of these are easy tasks.  But they are necessary.

I hate old videos

We are not big video-making people.  We haven't consistently documented any of our kids' lives, but we've done a few video taping sessions here and there.

We did a fair amount the year Janey was two.  Or I remember us doing a fair amount, and I've seen them around.  But I don't watch them.  I watched a bit of one, once.  I started to scream, watching it, and begged Tony to turn it off, which he did.  It was Janey, pre-regression.  She was talking.  Talking as well as any two year old talks, better than some.  There were slight oddities to her talking, but it was talking, fluid talking.  Her eyes were engaged, she was lively and cheerful.  She was pretending to be the singer in a band the boys were making, and if I can recall, she said something like "This is Janey and the Amazing Band!"  Not echolalia.  Regular, creative talking.

This morning, Tony was looking at an old private group he'd created on Facebook, one to keep track of Janey's health issues.  At one point, he'd uploaded some videos of Janey onto it.  They weren't dated, but I would guess she was 6 or 7 in the video I watched this morning.

What I knew, from reading old blog posts and from what I can remember, is that after her big regression at age 3, Janey's talking at one point recovered slightly.  It was in no way up to age level, and I think I'd convinced myself it was about like it is now.  The video showed me I was wrong about that.

The video starts with Tony filming our cats (we had more then---four of them).  Then Janey walks in the room.  She is carrying a frozen pizza.  She says "Want some pizza?  Open it!  I want pizza!"  She sets down the pizza and repeats that, and uses sign language a bit, or her own version, pointing to herself and then opening her hands to show "open"  I say "But what is the magic word if you want something?"  She repeats "pizza!" and then I start it for her---"Ple....." and she says "Please!"  Then, I say "Okay, I'll make pizza, but first, can you say your name for the video?"  She says something I can't understand at first, but then says "I want a banana milkshake!"  I sometimes call her Banana Pancakes or Banana Milkshake as a nickname---no idea why, but I still do.

It isn't just the talking in this video that's far more fluid and easy to elicit than it is now, it's her whole demeanor.  She is more relaxed, more engaged, more lively than I've seen her in the last 3 or 4 years.  She is, to put it plainly and in terms that I hope don't offend anyone, closer to typical, closer to what we call normal.

I fool myself a lot, or pick what I want to think about, or to be easier on myself, simply don't think about things a lot.  I know in my heart Janey's talking is decreasing over the years.  She talks less now than a year ago, much less than maybe 5 years ago.

She is not losing ground in other areas.  She understand more all the time, from what she can show us.  She is able to do more for herself.  She is calmer, mostly (although we had a rough weekend at points, and if I am again brutally honest with myself, we have a lot of rough weekends)  But she is more affected outwardly by her autism than she used to be---I have to admit that.  And it's okay.  It's truly okay.

The latest thing that parents who blog about autism often seem to be called is "martyr parents".  That hurts.  I don't ever, ever, ever want to seem like a martyr.  And I don't feel like one, I don't think I am one, even if I dig into the depths of my soul.  It is my great privilege to be Janey's mother.  I love her more than I can possibly state.  But that love includes wanting her to be able to express herself, to be engaged in life, to be open and able to enjoy what life has to offer.  I can't see her decreased talking, and more than that, her decreased engagement in others, as a positive.

Should I make myself watch old videos, to force myself to see what I don't want to see?  What good does it do?  I don't think that anything I can do, or the schools can do, changes Janey much.  Or that is wrong---what we CAN change at times, and I think we have, is how accepted she feels, how much of her time is spend screaming or crying or otherwise unhappy.  That is less than it was  in the past, for the most part.  But despite many, many years of speech therapy and ABA therapy and excellent teachers and aides and therapists and a family that does whatever we can to help her communicate---as the years go by, Janey talks less and less.  There are moments that stand out, great things she says, but I would say this weekend she said a total of about 5 different phrases.  There was "want to go for a car ride?", "want to snuggle on Mama's bed?"  "want a TV show?", "want a shower?" and "want shoes on?"  She did not answer any questions.  She did not label anything, or comment on anything, or say anything we haven't already heard many times.  This weekend was pretty typical.

I hate old videos.  I hate feeling like somewhere along the way, not just once but at least twice and probably more times, Janey lost ground she had gained.  I think I'll wait another decade or so before watching old videos again.

"How was school today?"

Shortly after Janey started K0, which here in Boston is what they call public preschool for 3 year olds, I asked her one day after picking her up how school was.  She said "We did music with Mr. Tim.  We sang a snowflake song"  I was a little doubtful, as it seemed early in the year for songs about snowflakes, but I asked her to sing it and she sang a little.  That's all I remember about that conversation.  I wish I remembered more.  It was the only time Janey was to ever tell me about her day in school.

Writing that, I'm crying a bit.  I don't like that much to think about Janey pre-regression.  Her regression was late and severe.  It started a bit before she started K0, a class she was in not at all on an IEP or in special ed, but that she got into because Freddy was at that time in 5th grade in the same school.  The first day of school, I mentioned to the special ed teacher in the classroom (as it was an inclusion school and each room had both a regular ed teacher and a special ed teacher) that I was starting to have some concerns about Janey, and I asked him to let me know if he saw anything that made him share those concerns as he got to know her.  It was only about a month into the year when he said he did, and it was a couple months after that that Janey was formally diagnosed as autistic.  During those months, she lost nearly all her speech.  It has never returned to the level it was when she was two.

I am very grateful that Janey does speak verbally at all.  I know it's something never to take for granted, something that so many mothers of children like Janey would love to hear, to hear a single word ever from their child.

It's still hard, though, to think about when Janey talked more.  Usually, I just don't.  I don't watch, ever, the few videos we took of her talking.  Even though I don't watch them, I wish we had taken more.  You don't think about that.  You don't think that the chattering of your two year old might be something you never really hear again.

During our cross country trip, during which Janey turned three, just before starting the K0 class, we stopped at the Custer National Battlefield in South Dakota.  In the gift shop, Janey saw a family with a girl about her age.  She walked up to them and said "Hi!  I'm Beautiful Janey!"  We still laugh often at that.  She had been hearing from relatives we visited on our trip all the time how beautiful she was, and I guess she'd internalized it pretty well.  I remember that moment so vividly.  It was another last, the last time I remember her ever introducing herself.

Another time, shortly before the trip, Janey started singing "Elmo's got a gun..."  I asked her where she had heard such a thing, and she said "Freddy showed it to me, on the internet"  There was a Sesame Street parody video featuring that song, and Freddy owned up.  That was the one and only time ever she told on her brother.

For a long time, I thought Janey's speech would some day come back to where it was when she was two.  It ebbs and flows, but it's never come close to that level.  Sometimes I read old blog entries and realize that it's not as good now as it was when she was around 6 or 7.

Janey knows a lot of words, words that seem stored and that come out only on rare occasions.  A few days ago, I was reading her "Go Dog Go", her favorite book, and for some reason I asked her what the dogs on the boat on one page were playing, and she said easily and quickly "A banjo" which was completely correct.  I had no idea she knew that word, or other words she's used in that same context, to answer a direct identification question---"raccoon", "drawbridge", "crab", "volcano"---to name a few I can think of.  But in daily life, she uses mostly one sentence, modified slightly for what she wants..."I want cheese.  I want soda.  I want snuggle on Mama's bed"

Every day, every single day, when Janey gets off the bus, I ask "How was school today?" Every day, she doesn't answer.  I don't know if she ever will again.  And I wish, like the old song, I could have saved time in a bottle, and could hear again that one time that she did tell me how her day was.  I wish that a lot.

As 2016 ends...

2016.  A lot of people seem eager for this year to end, but for us, and for Janey, it was overall a good year.  It held far less ups and downs and dramas than the last few years---no burst appendix, no psychiatric hospitals, far less days of crisis.  It feels mostly like the legendary prophesy I've always heard, that life with a child like Janey gets easier in time, has come to pass.

What caused this?  Much of it is just Janey growing up, and in a way, us growing up too.  After the years of crisis, we made a decision, unconsciously, to change instead of asking Janey to change.  It's not like we woke up one morning and suddenly became radically into total acceptance, but we somehow realized that everyone is happier if we let Janey be Janey, if we embrace the things she loves and minimize the things she doesn't.

There are other factors too.  She is in a stable school situation.  I think the change of schools when she was in third grade had a huge destablizing effect for a couple years.  It was probably a necessary change, but I am not sure if I had it to do over knowing how much it would throw her off, I would have agreed to it.  But now she's been in her new school for years, and it feels familiar and comfortable to her.  The medication she is taking seems to be helping, too.  Her brothers are away at college, and although we all miss them hugely and love it when they are home, she is essentially an only child when they aren't, and she loves the undivided attention. 

I'd be amiss if I didn't give credit to music, too.  Music is such a huge part of Janey's life.  She knows what she likes, and she is an extremely interactive listener.  When she hears a song she loves, you would have to be devoid of any sensory input to not know how much she loves it.  She rocks and rolls and screams in delight and asks to hear it over and over and simply shows joy that I wish every performer of the songs she loves could hear---it would be a tribute they wouldn't forget.  Her tastes are eclectic.  She loves Christmas hymns and Twisted Sister and the Beatles and banjo music and the occasional Chipmunks and too many others to mention.  There's much she doesn't like too, and she lets us know in no uncertain terms---when a song comes up that she hates, she said "I want MUSIC!", letting us know that whatever horror we are playing doesn't deserve to be called music.

I need to be honest, though, and say at times, I feel a lot of sadness over the equilibrium we have reached.  I wish I didn't, but I do.  Janey talked less in 2016 than she did in probably any year since she first regressed at 3.  That was hard to take.  Her speech has slowed down.  She uses familiar phrases and simple requests, mostly.  The other day, I was remembering a time when she was two, when we were in a waiting room and there was an old lady there, and Janey said "I don't like she!"  The lady heard and it was of course hugely embarrassing, but the thought of her expressing an opinion that directly and easily---I suddenly started to cry very hard, thinking how she can in no way do that now.  I was driving and had to pull over.  I accept Janey's speech, I am glad she talks as much as she did, but still, I must admit, I feel a huge amount of sadness and anger over whatever took her speech away.

At points this summer, I thought we might actually have the whole toilet training thing down.  But we don't.  That area has regressed badly.  Sometimes I am ready to simply admit Janey might never be trained fully.  It would be a relief to admit that.  She manages at school in underwear, but lately she comes home and immediately soaks herself, and I wonder if she is working very hard to hold in urine at school all day.  At home, although we take her to the bathroom endlessly, she very often, very very often, has "accidents", and I am starting to feel that even just thinking of them as accidents instead of just her doing the best she can do is doing her a discredit.

With all this being said, what I most wish I could portray with words is how much joy Janey brings us, what a wonderful person she is.  When she is happy, she is the happiest person you can imagine.  She makes everyday little things feel like the world's biggest treats---shopping for salami, hearing a great song, snuggling, sneaking a drink of coffee, giggling over nothing.  There are times Tony and I look at each other and smile, and we are both thinking that few typical 12 year old girls would love their parents as unabashedly and exuberantly as Janey does.  As I was writing this, Janey made her most common request---"Snuggle on Mama's bed?" (the bed is hers, not Mama's, but the phrase doesn't reflect that!)  As I snuggled her, I asked her if I could take her picture.  Here's that picture--messy hair and all---which might give you a little idea of the joy that girl's face can show.  

Happy New Year to all, and may 2017 bring you all joy.  

Five years ago, but it could be today

Just now, I read the blog post I'd written about Janey five years ago, The Patience of Job.  It wasn't an especially mind-blowing post, or one about anything major.  It was about how much patience it took to get through one morning with Janey, one where she woke up at 1 am and I had to get through until school started, which at the school she went to then was about nine

Janey five years ago

.  I was curious how other years had been around this week of the year, as this was the week that two years ago Janey wound up at the psychiatric hospital.

What struck me most about what I read was how very similar to today it seems.  Janey's speech, her interest, her behaviors...so little has changed.  She still asks for the same things, with minor variation.  She asked for baths then, now it's showers, she was more into Kipper and Barney then, which she still does watch, but more often Scooby Doo or Courage the Cowardly Dog.  She still constantly asks to snuggle on the bed.  She no longer asks for bottles (babas), which even then really meant just milk in a glass, but she still asks for cheese and cabbage a lot.  Her sleep is better than then, but there are still sleepless nights now and again.

Janey's lack of progress in many areas is one of the things that has been getting to me lately.  Speech is the biggest area in which she, if anything, has regressed a little.  She talks pretty much exactly like she did five years ago.  What has been hitting me all the time lately is that she speaks far, far less than she did ten years ago, when she was two.

Over the years, I haven't thought about Janey's big regression that much.  Mostly, that is because I can't bear to.  I have consciously put it out of my mind.  I don't know why it's sneaking back into my mind lately.  But until about Janey's third birthday, she talked a lot.  Her speech had some oddities, but it was good, even very good, for a two year old.  She was followed closely by Early Intervention, and she never had speech therapy---I even remember them joking about how little needed it would be.  It bothers me some how little I can even remember of that fluent speech.  It would jar my memory to watch the few videos we made of her, but I can't do that.  I have tried, maybe twice, and simply fallen apart and turned them off.  But I know she spoke well, well enough to tattle on Freddy for showing her a scary Sesame Street parody "on the internet", well enough to talk non-stop one day about how much she wanted to go to the playground, as I remember timing it sitting here by the computer and noting she had talked for five minutes non-stop.  Enough to tell a friend's daughter that they would be "best friends forever"  And I have to stop remembering now, because I'm crying.

Most of the time, I don't get caught up in "why".  It's useless.  But something has hit me lately that I am thinking "why" a lot.  Why hasn't Janey progressed, when so many kids with autism do?  Why did she regress in the first place?  What happened?  WHY?

I'm not going to talk politics here, although of course tomorrow is Election Day.  It's been a depressing election season, and that hasn't helped my gloomy feelings.  But whoever wins, at whatever political level, I wish they could meet Janey.   It is ironic that people like her are the least able to speak out about what they need and want from government, but are perhaps the most affected by the whims of government.  I am terrified of my own aging, because I am terrified of a world where Janey doesn't have parents to protect her.  I'll close with a picture I took of Mayor Thomas Menino's gravestone.  He was a politician of the best kind, and the quote on the stone is something I wish all politicians took to heart.

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.

Angry At Autism

I want to warn people that I think this blog entry will be a little raw.  It's one of those entries I write more for myself than anyone else, just to vent my feelings.

I am feeling angry today, furious really.  Not angry at any person, or institution, or event.  I'm angry at autism.  I think it's fair to say I hate autism.

In response to the arguments I am making in my own head to that statement---saying I hate autism doesn't mean in any way I hate people with autism, hate Janey.  I love Janey more than I can imagine loving anyone on earth.  And it doesn't mean I don't realize that not everyone with autism has a form of it that would stir up hate.  I wish there were different names for different kinds of autism.  There is autism that makes people a little quirky and interesting, autism that is something a person can and often does feel proud to have.  But if they are able to feel that feeling, they don't have Janey's form of autism at all.

I hate autism for what it has done to my daughter.  It took a sweet little girl, a girl that in most ways was developing normally, a girl that more than one person said to me "Well, at least we know she doesn't have AUTISM!" as if the very thought of that outgoing, happy child having autism was something we could almost laugh about, and within a few months, stripped her of her happiness, her ability to communicate anything but the most basic thoughts, her ability to learn...autism came like a thief and somehow, before my eyes, robbed Janey of so very much.

I hate autism for tormenting my beautiful girl.  I hate it for making her bite herself until she has a permanent scar on her arm, for making her scratch herself so badly she sometimes bleeds, for making her scream a scream of what only can be described as agony, over and over and over, for making her cry sometimes for days for no reason she can tell us, for making her perform useless rituals increasingly frequently, for keeping her from sleeping, for doing things to her that if it were a person doing them, would be rightly called torture.

I hate autism for making learning so hard for Janey, for making it that any testing she has ever had shows her to be severely retarded, although I know, when I allow myself to think about it, that there is an amazing mind locked away somewhere in her brain.  I hate it for keeping her from reading, from doing math, from being able pursue her interests in any depth.  I hate it for taking someone with many gifts and talents and making them unable to use those gifts and talents.

I hate autism for taking away so many of childhood's joys from Janey.  I hate it for taking away any real enjoyment of Christmas, or birthdays, or Halloween.  I hate it for taking away slumber parties and playdates and ballet lessons and first dates.

I hate autism for the what it will do in the future.  I hate it for keeping Janey from ever getting a high school diploma, a college degree, a husband, a family, a first apartment on her own, a life apart from her parents.

I hate autism for making our home life so often a living hell.  Janey doesn't make it that way---autism does.  Autism keeps us from vacations, dinners out, visiting friends as a family.  Autism will take away any years Tony and I might have had of a leisurely retirement.  Autism will make me terrified of getting old, of not being on this earth to protect and care for my precious, precious girl.

Maybe I am not supposed to say I hate autism.  Maybe I am not supposed to be angry at it.  But substitute any other name for autism in this post, and imagine NOT hating it, NOT being angry at it.

I love Janey.  I hate autism because I love my daughter.  Janey's wonderful traits, and she has many, are not part of the autism.  They are what the autism has somehow spared.

Tomorrow we have our big, big IEP meeting.  I will write about that, and I will try to be less emotional than I am today.  But for now, I am allowing myself, until Janey gets home and I put aside any emotion to give her the best night I can, to give in to hatred.  Just for today.

The Big Bag of Toys

Janey is continuing her current wonderful stretch of happiness, with a little more talking added in to the mix.  It's been fantastic.  I need to remember days like this when there are days way at the other end of the pendulum, that there are days when Janey is just amazingly sweet, happy, funny, cooperative, engaged...I need to savor every second of these days.

When looking for something in our cellar, I came across a huge bag of toys I had stored at some point.  I think I put them away when Janey was about 5, possibly during the awful, awful period of time she had then, when she cried for about 2 weeks on end.  My memory of that time is a little hazy, but I think I was trying to clear out the house to try to somehow make it better for Janey, and I decided to put away a lot of toys she had no interest in.  It was like a time capsule, almost---toys that Janey had liked at 2, but that by age 5 she ignored.  There were lots of Care Bears, assorted stuffed dogs, a Bitty Baby and a Cabbage Patch Doll.  It was hard looking at them all.  I remembered the boys gave her the Cabbage Patch Doll for her 2nd Christmas (with my help).  I bought the Bitty Baby actually for myself, actually, when I had realized I wasn't ever going to have a girl.  A month or so later, I was pregnant with Janey.  Janey loved dogs for her first few years more than anything, until she suddenly stopped noticing them, and then became extremely afraid of them.  And Care Bears?  There was a time when Janey knew their names, asked for them at stores, was a huge fan.

I decided to bring a few of the toys up, mainly the Bitty Baby and the Cabbage Patch Doll.  I had them waiting for Janey when she got home.  There wasn't any miracle---she didn't suddenly want to play dolls---but she looked at Bitty for a long time, especially her eyes.  And when I handed her Cabbage Patch, I wanted to think I saw a tiny bit of recognition in her face.  I asked her "What is the doll's name?" and she actually said "It's name is Til...." and then looked away.  I jumped on it---"Her name is Tilly?  Hi, Tilly!  Are you Janey's doll?  Let's play with Tilly!"  Janey humored me with a smile, and I had Tilly kiss her, I brushed Tilly's hair, we looked at her fingers and toes and belly button---I had fun.  Janey I don't think really cared, but she didn't actively try to stop me.

I think the dolls are going to stay around for a while.  I think I'm ready for it.  They don't make me as sad as they did for a while.  I know the long, long ago Janey that had an interest in them might not be coming back.  But the Janey I have now---well, if she doesn't want to play with dolls, it is okay.  She has her own things.  She loves to run and jump, she has varied and cool taste in music, she can run YouTube like a pro, and just this morning, when one of her classmates greeted her, she let go of my hand and went to hold her friend's hand, and smiled a huge smile.  Janey is becoming her own person.  Like any child, she is not always exactly the child I pictured.  I am not blinded to the reality that she is in many ways severely disabled, that she is not like other children in some very big ways, that her life will be affected hugely by her limitations.  But with all that being said, she is perfect at being Janey, and I love the Janey she is.

The Huffington Post article

Last week, I was interviewed for an article about autism in girls by a reporter from The Huffington Post.  Here's the article--- link.  Being interviewed was an interesting experience!  It was much more nerve-wracking than I had ever pictured it being, not because of the reporter, who was very nice, but because I think I do better writing things down than talking about them live.  I can think about what I write here, but when talking, that internal edit has to be done much more quickly, and I kept worrying I'd say something wrong.  We talked about a lot of things, but the quotes in the article of course were mainly about the thrust of the topic of the article---how autism in girls is rarer and sometimes less easy to see.  I told the reporter before the interview I wasn't sure I was the ideal person to talk to, because Janey's autism isn't subtle.  Strangers on the street can diagnose her.  But the article is actually making me think more about why Janey wasn't diagnosed until she was past 3.  I don't think she was autistic before that.  I think she regressed.  But I know, from what I allow myself to think about before she regressed, that there were subtle little differences in her.  She talked much more to me than to others, and even close friends have told me they questioned how well I said she could talk.  She had a few odd behaviors, and once in a long while, I'd have a moment of wondering---is all okay here?  And there was her very, very late walking.  She didn't walk until she was past 2.  Was that just slow physical development, or something more?  It's very possible that her being a girl gave me just that extra bit of blindness to what was coming.

One thing I did want to clarify from the article is it saying Janey is non-verbal.  I didn't say that to the reporter, but I can understand why she might have thought it (if she didn't read my blog much).  Janey is certainly low-functioning, and a lot of autistic people who are low-functioning are also non-verbal.  But Janey does talk.  She is not really very FUNCTIONALLY verbal, though.  Her talking is of a limited kind.  She requests things, which is great.  Most of her talk is in this formula "I want bacon.  Bacon, please.  Bacon"  You can put anything else in the place of bacon, but she say it in that same way every time.  The rest of her talk is mostly delayed echolalia.  She recites parts of videos, TV shows and sometimes things people have said live to her.  Sometimes, she does this in a way I call in my head "cut and paste" talking.  She picks from her store of lines something that has relevance to what is going on.  For example, if she's made a mess and we are cleaning it up, she says a line from Kipper "I can't play with you right now.  I'm cleaning up YOUR mess!"  Or if she's in a hurry to get something to eat, and we are taking too long, she says "Wait for the milk!  Wait for the milk!", another Kipper line.  Janey also sings a great deal.  Her singing has never been affected by her autism, in that when she regressed in other ways, it didn't seem to affect the musical part of her brain.  She can sing probably thousands of songs, in perfect tune and with all the lyrics.  It's never done on command.  She's like a iPod set on random, with a song she might have heard years ago suddenly popping up.  The exception is Christmas carols, which if I start one, or even just say the name, she'll usually jump in and sing.  Her love for Christmas music is a huge part of her life.

If you are reading this blog for the first time after finding it from the HP article, welcome!!  I am thrilled and amazed, always, to have people from all over the world reading what I started out as just kind of an on-line diary of life with Janey post-diagnosis.  It's turned into something more---a way for me, and I hope for others, to feel less alone, to know there are others out there with autistic girls, all of us doing the best we can.  I hope if you are new to this sometimes lonely journey, you will find a place here to help just a little.  I'm thinking of all of you, and, on this pre-Thanksgiving day, thankful to all who journey along with me.

Sally Cat and Regression

Sally Cat showed up today.  She does, now and then, I guess when I am in need of a good cry.  She is a pink stuffed cat that meows when you push on her.  She was bought when Janey was 2, on a trip to the Gap.  Janey asked for her, and although she needed a new stuffed animal not at all, I could tell it would be a battle not to get her, so I gave in.  One of the many things about Sally that makes me cry is that that was probably the last time Janey ever asked for a toy in a store.  I wish I had bought her with enthusiasm.

Janey loved Sally, for a brief period---probably about four months.  She named her herself, when I asked her the name.  I don't know where she came up with Sally, but at the time, I didn't wonder that much, as you know two year old---going through that language explosion and saying all kinds of things.  We took Sally everywhere we went, and she was part of the family, as kids that age get with a favorite toy animal.  Then came the summer of 2007, and the horrible regression.  By the end of the summer, Janey no longer had any interest in Sally.  She couldn't say her name, or much of anything else.

I showed Sally to Janey today, and kind of hoped for a miracle.  I don't do that a lot.  And I didn't get one.  Janey did her not-look looking at her and tossed her aside.  I said "This is Sally!  You used to love Sally!"  No answer, no recognition that she had heard me.  Par for the course.

I don't think much about Janey's first 3 years.  I can't.  I just can't.  If I do, it's too hard.  I tend to remember only the early signs something was wrong, and not the little girl who talked well, when she wanted to.  I think, though, sometimes, about the last visit from the PT who saw Janey in Early Intervention, before they discharged her, saying she no longer needed services.  The PT was great.  She said "Please always stay in touch with me.  Janey is so bright and talks so much!  I can't wait to see how she does at school!"  I never called her.  I never could bring myself to.  I didn't want to see or hear her shock.  It's easier sometimes to pretend that Janey never existed.  It makes acceptance easier, and I do accept Janey as she is now.  Of course, she is the same person she was then, but sometimes, somehow, it's easier to almost pretend she isn't.  I have heard that the notion of changelings might come from autistic kids in the past that regressed, and I can see why.  It's like someone came and took one Janey and replaced her with another, identical looking Janey.

But I won't write about that any more right now.  Even writing about it is too hard.  I put Sally away, where I won't see her for a while.  I would never get rid of her.  She's a keepsake of a time that I do accept isn't coming back.  Sometimes, when I see parents in stores exasperated at their kids for asking for every toy they see, I almost want to tell them the story of Sally, and tell them---buy the toys.  Buy them, because you never know.

Dogs

Yesterday I took Janey to a farmer's market near us.  She has been cheerful the last week or so, and she was so at the market---walking around, looking at things, content as long as I kept moving.  William came along with us, and once we had looked at most everything, I wanted to go over to where he was and leave.  However, that became impossible, due to Janey's phobia of dogs.

I have no idea why Janey is scared of dogs.  She used to LOVE them, as a 2 year old, even though we are not really dog people.  She would seek out dogs wherever they were and no matter how big or scary looking the dog was, she'd go right over to it and show it some love.  Then her regression came, and for years, it was like animals didn't even exist.  She paid no attention to them one way or the other.  Finally, she started to give our cats a tiny bit of recognition, sometimes patting them a little or at least looking at them.  But around that same time, she started to fear dogs.  It's not the same as many of her other reactions when she sees a dog.  It's basically a freeze reaction.  She stops, becomes silent, and simply won't move another step closer to where the dog is.  That's what happened yesterday.  There were lots and lots of dogs at the market, on leases and well behaved, but Janey just wouldn't walk in a direction where she saw one.  For a little while, we got caught in the middle of a bunch of them, and we couldn't go anywhere.  Janey didn't cry, she didn't say anything, she just became like a statue.  When I tried to hold her hand and keep her moving, she just stood her ground.  I would have had to drag her, or pick her up, which now that she is 60 pounds, I really can't do.  So we just stood there until some of the dogs moved on.

I really don't know what to do about this dog phobia.  I try reassuring Janey, I try reading her books with dogs, I try to talk to her about them.  I don't really have any close by friends with dogs I can have her get used to.  My sister has dogs, but she's moved far away now.  For now, it's not really restricting her life much, but it makes us not able to go to parks much, and as she gets older, she might outgrow back yard playing and want to do more outside things.

Maybe the dog awareness is a good sign.  Janey is noticing what's around her more, and scanning for dogs all the time, which is more than she used to do.  And dogs are not like cats.  They can come on strong.  They are sociable.  Cats don't tend to care if you pay them any attention or not, but dogs want you to interact with them.  That might be why dogs can be good therapy for autism.  When Janey first regressed, I read a lot about therapy dogs, which I found out were for kids over 6 with autism.  For a while, I kind of planned to look into getting one for Janey when she reached that age, but 6 is right when her phobia started.

Does anyone out there have experience with autistic kids and dogs?  I'd love some ideas on how to work on this phobia, or insight into whether it's worth it to work on it at all.

"What happened?"---the pictures

Yesterday, when I was cleaning up a pile of clutter, I found an old calendar I had had made, one of those Shutterfly type things where you pick pictures of your family to use.  It was beat up, from having been lying around, but the pictures were still enough to prompt Tony to say something I don't think I've ever heard him say before---"What happened?"  He was looking at pictures of Janey (here's one)

and seeing what we sometimes just can't look at, because it's so hard---how un-autistic she used to be.  We don't talk about her regression a lot.  It's far too hard to think about.  Sometimes it's easier just to pretend in our minds that Janey was always the way she was.  But she wasn't.  Until she was almost 3, she was not autistic.  Not at all.  She had a few oddities, she was very delayed physically, but you can look in those eyes and see---she wasn't autistic.  She talked far more than she does now.  She was a quirky talker---but she talked.  I sometimes have trouble even remembering or believing how she used to talk.  But I know by age 2 she was telling people they were her "best friend forever"---sometimes Freddy, sometimes my friend's daughter Julia, who she called Jua.  I know that just before we left for our cross-country trip, we visited my parents at a campground, and my mother commented on the chipmunks and the mockingbirds, and Janey said "I want to see the chipmonkeys and the knockingbirds!"  I know her doctor, at 18 months, said "Well, at least we know she's not autistic" when she spend all of her brother's appointment trying to get his attention.  I know the PT that worked with her from Early Intervention often said "I love seeing Janey and hearing what she has to say".  And then...it all went away.

Here's another picture from that calendar...

Those eyes that looked right at you---they are hard to see now.  What did happen?  We will never know, probably.  A couple months before her 3rd birthday, I remember distinctly the first moment of doubt.  We were at the science museum, with my friend I just mentioned, Maryellen.  Janey was talking to herself as she looked at a dinosaur.  She was being very self-absorbed, and I said something lightly like "she loves imaginative play like that!" and Maryellen said, hesitantly "I don't really think she's being imaginative".  That planted a seed, and I was watching Janey intently, and starting to see a few few odd signs---she was a little less engaged, she seemed to be talking a little less.  But it was nothing severe.  I asked another friend, who is a special ed teacher and who knew Janey well, if she thought Janey seemed like she could be on the spectrum.  She gave it good thought and said no, she really didn't think so.

And then the trip.  We drove cross-country---6 days out and 6 days back, staying out there for a week in between.  Janey left for that trip not autistic.  She came back autistic.  She turned 3 during the trip.  Whatever was waiting to happen to her brain happened then.  I don't think the trip caused her autism, but we wrack our brains to think if anything happened.  Did she somehow have a stroke from being in the car a lot?  She's had an MRI since then, and there were no signs of a stroke. We stopped often, but could that have happened?  Was she so tramautized by all the hotels and different houses it changed her somehow?  It hardly seems likely.  Was she too bored in the car?  Freddy sat next to her the whole way, and interacted with her constantly.  My best guess is what was going to happen had already started to happen, and the trip just somehow rushed it, or was coincidentally at the same time.

There are a few videos of Janey pre-autism.  I wish I could share them with you here, but I can't.  I can't watch them at all.  I tried, once.  I fell apart.  I screamed.  It was too hard.

I love the Janey I have, but I loved that other Janey too.  Of course she's the same person, but Tony's question, one we don't allow ourselves to ask often, is heartbreaking.  What did happen?

Here's one last picture of Janey from the calendar, before I put it away and not look at it for a while.

Autism speech, or Janey's speech, anyway!

"You say you want to take my socks on, please"

Janey said that to me last night, as she was falling asleep.  It's a pretty typical line from her, but for some reason I thought about it a lot as I too fell asleep.  It has a lot of the elements of her language in it---a lot of what I'd like to figure out about her.

"You say"  --  Janey has started using that at the beginning of a lot of utterances.  It's a little piece of echolalia, from people telling her what to say.  For example, when she's screaming her head off, we might say "You say 'I feel sad!'"  Or if she's supposed to say hi to someone, "You say 'Hi, Maryellen!'"  Mr. Ken, Janey's ABA specialist, has worked on that, by just having us say what we want her to say without the instruction---if we want her to say hi to someone, WE say hi to that person, and then kind of gesture to Janey to follow.  He's very good at getting that to work---me, not as much.  But sometimes it's hard to implement.  When Janey is crying and I say "I feel sad!", it's understandable if she sees that as a statement about myself (and usually I AM sad, if she is)  Whatever the reasons, I think Janey has decided that "You say" is a handy way to start a sentence.

"You want"  ---  And there's the classic pronoun reversal!  I've read that it's very, very common in autism, and very hard to find a way to stop.  One place I read said they really don't understand how typical kids DON'T reverse their pronouns.  How do they learn that when someone says "I", they are talking about themselves, and that it's not just a way to refer to that person?  If Janey is asked "Do you want bacon?", it seems to make sense for her to say "You want bacon" to mean "I want bacon".  Janey doesn't always reverse her pronouns, and it seems a little random when she does and doesn't. But she often does, and I have no idea how to work on that.

"to take my socks on"  ---  That's Janey's other reversal, and not one I've heard is part of autism.  She says the opposite of what she wants a lot of times.  She wanted her socks OFF, so she says to take them ON.  That's a rare thing I remember from her pre-autism speech.  When she was two or so, she always said "Pick me down!" when she wanted to be picked up.  It's like she takes the state she's in, that she doesn't want to be in, and says that.  So we get "buckle me out!" when she wants her seat belt on, "put the TV off!" when she wants it on, "Turn off the light!" when she wants it on, and "Put on my pull-up!" when she wants it off.  It would be harder to figure out if it was not usually evident what she really means, but I still wish I could figure out how to have her clarify those statements.

"please"  -- Now there's a nice one.  Janey has gotten wonderful at saying please.  Most everything she says is a request, so please usually fits in there someplace.  She's even learned how to say it in a pleasing way, in a very sweet voice.  However, like everything with her, there's a catch.  We sometimes call please the magic word, and she believes that literally, I think.  If you say "please" nicely, anything can happen!  There can suddenly be bacon when there wasn't any bacon in the house before, we can go for a ride in the car at 3 am instead of sleeping, I can stop my foolish insistence on brushing hair if she asks nicely enough---it's a magical word indeed!  Her use of please is also delayed echolalia at work.  She's heard it enough, so it automatically gets put in there.

I love it that Janey can talk.  A lot of kids with her level of autism and intellectual disability can't, and there was a time right after her regression, for a few months, when we thought she was losing all speech.  Her speech, however, is deceptive.  Almost all of it is like the example here---a pieced together and echolalia filled and odd way to make a request.  But I'll take it.  I know I am lucky to be able to hear her voice.

Early on Thanksgiving Morn

I had intended to write a post about all I am thankful for today.  That's the traditional Thanksgiving thing to write, and I am certainly thankful for much---wonderful people in my life, great schools, an amazing family, music, books...many things.  But somehow that post was not getting written today.  Last night was tough, not just with Janey but with all three kids---lots of emotions, parent vs. child expectations for family togetherness, the holiday stress, medical issues---it was a hard night.  Not that I'm not still thankful as all get-out, but I thought I'd write a more specific post---about Janey, about being thankful for her.  And I am---with all the challenges she brings, I am hugely thankful for her.

Where to begin?  Maybe when I found myself a bit surprisingly pregnant in my late 30s.  Not that we don't have an idea how people get pregnant.  Not that we didn't realize you don't have to be actively "trying" to get pregnant, just a little not careful.  I won't get TMI (for you older folks, that's Too Much Information) on you here, but finding out on the day after Christmas 2003 that we were expecting child #3 was a big surprise, and a happy one.

And then of course, leaving out all the extremely tough parts of the pregnancy, there was that amazing moment when I got the call about the amnio, the news that we were going to "get our girl", as lots of people put it.  That was one of the peak moments of my life.  I loved having two boys first, but we were ready for a girl.

Leaving out again the hard parts of her birth, the moment I first laid eyes on my Jane was another flashbulb memory, an wonderful one.  She was unexpectably very blond, very light and so, so beautiful!

As Janey grew from beautiful baby to adorable toddler to amazing little preschooler, we had three years without autism.  There might have been signs, but they were subtle enough that early intervention (who saw her because she didn't walk until she was 2), her pediatrician and many other eyes didn't catch it, even though we knew she was at high risk.  I have buried a lot of memories of these early years, and I wish I hadn't.  She was a quirky but fascinating little tiny girl, one who delighted us greatly.

And then the regression.  And the hard years started, the years that continue on.  But still---so much to be thankful for.  Through all Janey has been through, she has retained some amazing traits.  She is physically very graceful---the athlete Tony didn't really get with his boys.  She laughs like no-one else.  She surprises people constantly with her affection, which cannot be bought or bargained for, but is given like an award to those who have earned it.  She adds to our family in so many ways.

I am grateful in a special way for Janey's love of music.  We listen together to songs every day in the car, on the computer, everywhere music lives.  She knows what she likes, and when she loves a song, and we look at each other in amazement at the glory of her favorites, it's the purest, most heart-felt connection I've ever felt with anyone.  It bypasses the autism in her and goes right to the part of her brain that seems to have been never touched by the autism storm.  We connect as equals, or as her my superior, in our love of the music that touches us.

I am thankful I have been given Janey.  She was not the result of a trip to Paris rerouted to Holland.  She is a destination of her own.  For all the challenges, the tough days, the tears, and I will never pretend that there aren't many, I am still thankful beyond my ability to write for Janey, the real Janey, the endlessly frustrating, endlessly challenging and endlessly amazing daughter of mine.

Best Friends Forever

Janey's brother Freddy has always been one of her favorite people. If you believe anything about astrology, which I don't, it would make sense---they share a birthday, so all those newspaper "if you were born this day" personality blurbs would be the same for both of them. Before Janey's regression, when she was two, she often called Freddy her "best friend forever" I think her regression was harder on him than almost anyone. He went from having an adoring sister to a sister that barely noticed him.

Just lately, the Janey that adored Freddy is showing herself again. The way her face lights up when he plays with her is like nothing else. Tonight, Janey and I were in the back yard, and I called Freddy to come out if he wanted to. He did, and when Janey saw him, she said, without one bit of prompting, "Hi, Freddy!" If you know Janey, she is not big on spontaneous greetings, especially to family members. She then followed him around, with a look on her face that can only really be called hero worship. He gave her piggyback rides, he showed her his attempts at cartwheels, they played "I'm gonna get you" and "Hockey Pokey"---they had fun. Not just Janey, but Freddy too. Gradually, I am seeing more of this, and it is wonderful. I think Freddy and Janey both really do have a BFF for life in each other.

Janey and The Care Bears

In some ways, The Care Bears have come along for much of Janey's journey through autism so far. She loved them starting at a very young age, long before she'd ever seen the show. Somehow, we had gotten her a few of the bears, and I can remember her at 1 and 2 carrying them around, and learning the names of a lot of them. I would sometimes take her to the toy store to get a new one, and she would pick out the one she wanted, and be excited about it. At the time of our cross-country trip, during which she turned 3, she loved them most of all. We must have had about 10 of them in the car with us. She watched "The Care Bears Movie" on a small DVD player she held in the car. When she had her birthday while we were in Olympia with family, my grandmother wanted to get her something special, and I suggested a Care Bear. I remember picking out Grumpy Bear, a bear she had wanted but we hadn't been able to find. I was a little surprised she wasn't more excited upwrapping it.

That birthday always seems like a dividing line to me. On the way home across the country, Janey was less interested in the Care Bears. By the time she started preschool a month later, autism had fully gripped her. She had little interest in the Bears, or anything else.

Since then, she has been off and on about watching the videos, but never again interested in the stuffed animals. We had some old episodes of the TV show that came with bears I bought, and she got into watching those for a while. There used to be a movie on Netflix, Journey to Joke-A-Lot, that featured the bears and that she watched a lot. But her interest was narrow. She liked the shows, and reciting from the shows, but she didn't know the bears apart, or care about them much, I don't think.

Lately, she started asking for the Care Bears Movie. For days, she wanted to watch it, but could only stand the first few minutes. When it got to the opening credits even, she would scream and cry. But then a few minutes later, she'd ask for it again. Although it was frustrating and inexplicable to us, we bore with her. Over this long weekend, gradually she started watching more and more of it. Today, she's watched the whole thing intently several times, and seems to have memorized much of it. She says the lines before they come on.

I wonder if she can remember how she used to love the movie long ago. I don't think it's the case, but I wonder if she felt upset about that memory when first seeing the movie again after the long years. Did she somehow realize that she wasn't the same now? Did she feel it was important to be able to watch it again? I'm probably thinking wistfully here. I don't think Janey has thoughts of that complexity. But it's making me cry to think of. Maybe it's a good sign she's getting the interest back. She's very happy watching it tonight. Who knows what goes on in her mind? I wish I did.

Another Year Ending

I glanced at Janey from another room today, and saw suddenly how big she is getting. She's turning into a school age girl, not a preschooler or toddler or baby. It's amazing and scary.

I'm trying to sum up this year with her, but it's hard. It was a year of ups and downs, as they all are, more extreme this year than in some cases. There was what I will always think of as "the terrible time" when she cried day and night for about a week, screamed like she was being tortured, more accurately. There was the giving in and putting her on medication, there was the adjustment period, and there was September, an incredible month of progress for her, the amazing start to school, the happiness and socialness and friendmaking. There was the regressions since then, there was this recent week which was tough. Overall, the big progress she has made this year is social. She sometimes greets people now, she is happy to see people she knews, she is more affectionate overall. Her talking is better in some ways, although still very limited. I think her vocabulary grew a good amount, but much of it is still buried and only comes out at the perfect prompting. She is showing very slow progress toward toilet training, and I am able to believe that will happen some day. Her emotions are a little more under control, but she still can and does have days where everything sets her off. I think Tony and I are feeling more positive in general about our life with her, but also more resigned. It was another year without a miracle breakthrough, not that I reasonably expected one, but I'm gullible enough to sometimes half believe the hype and think they sometimes happen. We know this is for the long haul. The day by day triumphs don't change the fact that for whatever reason, fate has dealt her a tough hand, and us too. I'm not going to say what I'm supposed to say, that we have realized she's a blessing and she has made every part of our life better. Of course she's a blessing---she's a beautiful, fascinating kid. But she has a disorder, a disease, if you will, that is going to keep her from living the life she would live otherwise, and it would be paternalistic and wrong to say I'm glad of that. Sometime, somewhere, something happened that robbed her of the potential she should have. It's not fair to her, much more than it's not fair to us. That's maybe not too uplifting for a New Year's Eve post. Let me try again. The best we can do for her is to accept her, accept what she is right now, use it as a starting point and do what we can to give her the best life we can with the limitations imposed. Not to accept her as some kind of canvas to try to work cures on, or some kind of reflection of some point about mankind, but accept her as a child with limitations, and love her.

Back and Forth

Janey's regression has backed off a little, but she's not back to what I would call "The Golden Month", September. She's been doing a lot more crying still, and just being unhappy. She seems to now have about one second's reserve of patience---she'll say "I want juice!" and then a second later---I WANT JUICE! I WANT JUICE!---and then the full-blown tears and tantrum. It can be tiring. But she's also doing some great talking and responding. On Thanksgiving she gave me a huge Thanksgiving treat. We were at a buffet meal and she said she wanted milk. None of the milk they had there seemed right, and she was starting to melt down when Tony remembered she'd had those little cups of cream for coffee there in the past. So I got her some, and she said, right away, unprompted "Thanks, Mama!" I cried. It was huge. Then I realized I might have mishead Mama and she might have actually said "Thanks, Arnold" which they say in a video, as the rest of the day she said that a lot, but who cares? The thanks was there. She is doing more of that answering. Sometimes when you ask her how she is, she says "Good!" This can be even if she's in the middle of crying. Or when I say something like "Let's get ready for school, okay?" she'll say "Okay!"

One of the things I've been realizing is how bored I think she gets. At school, she has pretty much one on one attention all the time, and if not, tons of kids around who are interested in her. At home, we do all we can to give her a ton of attention, but we have 2 other kids, housework, etc. There is very, very little that interests her on her own. I've tried every kind of toy I can think of, and none hold her interest. She likes videos sometimes, for a while, mostly Kipper, but that is not the way to spend all day. We try hard to include her in all we do, like having her "help" us wash dishes or do laundry, but that only goes so far. I think most 6 year olds can interest themselves in something for a little while---coloring, looking at books, playing dolls, etc, and most 6 year olds have friends they play with. Janey however needs us every minute. Add to that the fact she doesn't enjoy a lot of what we try to do with her (I'd sit all day reading books to her, or playing make-believe, but it just isn't for her), it makes it very hard to keep her happy all day. I'm so grateful for school.

We've had some very nice moments lately, though. One of Janey's favorite things in the world is Christmas music. She adores it. She welcomes all the old carols and songs back like old friends. I hold off until early November, but since then, it's all Christmas all the time. It's wonderful to hear her sing back a full carol, completely in tune and on beat, sometimes one she's only heard once this season. She did that with O Come All Ye Faithful. I've been making CDs of some of her favorite songs, all the same song on each CD but different versions. I do that so she doesn't get stuck on one song, but feels comfortable with the changes. She has strong tastes, which I am happy are usually like mine---she doesn't want things overly jazzed up. At the end of a song she particularlly likes, she will clap and scream in delight. I love that. I love it when I can share something with her on an equal level---it's amazing.

So it's a 50-50 thing. I think we are enjoying her more. She's developing more of a real personality, and finding her place in our family. However, we are also coming to terms with the fact it's never going to be easy. There is always going to be a struggle to keep her happy, she is not going to all of a sudden learn what a 6 year old usually knows, she is not going to suddenly get "unlocked" and be "normal". Not that I really thought that, but God knows I dream of it.