A system that only rewards those able to be demanding

 I recently read a report a consulting firm wrote about an investigation they had done into a now closed school that had been part of the Boston Public School system.  None of my kids went to the school, but I read the report with interest as it was addressing larger problems within the district.  In the report, I came across this passage...  "Finally, we found that BPS’s current practice of more urgently addressing SPED issues or “crises” when they are raised by vocal parents results in an inequitable system within BPS where certain families are at a disadvantage because they may not be aware of this option and/or able to advocate for their children in the same manner."

Wow.  That hit me hard.  It brought back, vividly,  different times when I know that Janey missed out on help and services she should have gotten, because I was not one of those "vocal parents", because I didn't know how to forcefully push the district to address her needs urgently, because, as I've always seen it in my own mind, because I failed Janey with my own lack of knowledge or wimpy nature.  But reading that sentence, I was hugely struck by how unfair it is to expect parents of special needs children to both know what to advocate for and also to know how to advocate in general.  And I had a lot of advantages that many parents wouldn't have had---I speak English, I have a college degree, I'm fairly well-spoken.  Imagine if I were none of those things.

When Janey was first diagnosed, she was in a half day Boston Public Schools preschool.  She was there because she had a sibling preference, as her brother Freddy was a student at the same school, and she started, at age just turned 3, as a regular ed student.  When she was diagnosed, a few months after starting school, we called for an IEP meeting, which was held pretty promptly.  At that meeting, we were told verbally that the next year, when she was 4, for what Boston calls K1, 4 year old kindergarten, her needs were such that she would go to school all day, not half a day.  We didn't push for the whole day to start right away---I was okay with waiting until she was 4.

However, at the end of her 3 year old year, I was told that she wasn't going to get one of  the two full day slots in her class, that the slot had been given to someone else.  

I was very upset, of course, but I didn't insist or scream or call everyone I could think of or demand.  i should have.  But it's not my nature, and I also didn't want her moved to another school that DID have a full day slot.  I loved the school she was at.  I did ask hesitantly why they couldn't create a 3rd slot, and was told that "just wasn't possible".  

The slot went to another child.  I won't get into any details about that, but it was pretty obvious the other family did the things I didn't do---demand, threaten to sue, make their needs very strongly known.  That is what I should have done.  Or that is what I've always told myself.  But why?  Why wouldn't the schools just do the right thing?  Why did Janey getting what she needed depend on me being a parent who was informed as to what I had a right to, knowledgeable about the right people to call, and also willing to not worry about hurting feelings or alienating people?  

At that first IEP meeting, we were told that Janey would be assessed for ABA services.  That happened---about a year after we were first told it would.  The IEP services finally started a full year and a half after the IEP meeting.  I was told, over and over, that the district was swamped, that they just didn't have the resources necessary to do an evaluation, to say nothing of offer ABA.  Again---I let it go.  I mentioned it off and on, but I easily accepted the answers that it just wasn't possible.  I don't know if earlier ABA would have made a difference or not.  Over the years, the ABA services Janey has gotten have been (mostly) delivered by well meaning and kind people, but the providers seem to constantly change and to use widely different approaches.  I've been very pleased with the last few years, finally, in high school, with Janey's ABA services, but did she miss some kind of crucial time for help because I didn't demand she gets services for that year and a half when she was so young?

I should have demanded more.  I tell myself that all the time.  But WHY?  Why isn't the system set up to HELP THE CHILD WITH SPECIAL NEEDS, not to reward those with loud voices and special abilities to navigate the system?  Special needs kids occur in all kinds of families.  Why should Janey has missed out because we weren't good at demanding?

I've gotten more knowledgeable over the years, and I've gotten better at being persistent in getting what Janey needs.  I'm still not a pro at being demanding, and I probably never will be.  But in those early years, I was about as weak an advocate as I could have been.

Reading the sentence I read tonight in that report---I can't tell you how much it resonated with me.  It was like someone had finally seen what I had seen all these years---a special ed. bureaucracy that seems to exist to deny help, not provide it, unless they are faced with a very specific kind of parent---one with the resources, knowledge, means and personality to get what their child needs.  Boston schools have come close recently to being taken over by the state, and part of the reason is the problems in the special education central office.

The poignant part of this is that despite the lack of support from the higher level people, the rank and file of the Boston special ed. educators are truly some of the finest people you could possible imagine.  I can't even start to tell you how wonderful most all of Janey's teachers have been, as well as her aides, her therapists, the school staffs from top to bottom including the clerical staff, the cafeteria workers, the principals, the IEP team leaders---I am happy to count many of those people as friends, and Janey and our family are so lucky to have them.  And they are as unsupported by the bureaucracy as we are.

I know this isn't just a problem in Boston.  It's a problem that exists all over, and until we decide that we will put children first, and give them what they need to succeed, it will keep existing.  Let's have a system that, instead of waiting for the demanding voices to demand, listens instead to the unspoken needs of those who, for so many different reasons, don't demand but so much need the help.

The Things Janey Cannot Change---a plea for serenity

 Last night, while Janey was lingering in the shower after I washed her hair, she said "Want to get out?" I knew what this meant, and it wasn't that she wanted to get out.  She wanted me to adjust the water, to make it hotter or colder.  

I started to reflect then, and kept reflecting all night and into today, on how little influence time and examples and corrections seem to have on Janey.  For years and years and years now, whenever she has said "Want to get out?" while in the shower, I've tried to get her to say what she really means. I've said "Do you really want to get out, or do you want me to fix the water?"  I've tried taking her at her word, and reaching in to help her get out.  I've tried getting her to repeat "I want you to fix the water" before I will do it.  I've tried everything I can think of.  And still, Janey asks to get out when that's not what she means.

I can think of so many other examples like this.  One that keeps coming to mind started at age four, when she first starting with ABA.  The therapist had a Slinky Janey liked, and Janey would ask for it saying "Yoyo?"  I think she started calling it that because she liked to have it bounce up and down, like a yoyo.  The therapist seemed to feel it was important to have Janey ask for it correctly, and would never give it to her unless she said Slinky.  And Janey never would say "slinky" unless she was prompted to, no matter how much she liked the Slinky.  Last month, I showed Janey a slinky from some box of sensory toys I'd gotten.  Janey grabbed it, saying, of course, "Yoyo!"  I don't remember Janey playing with a Slinky in all the 13 years since she was four, and if she did, I'm sure no-one called it a yoyo.  But that's her name for it, and it didn't change.

When Janey wants us to put a show on for her, and we ask which one she wants, she says "This one!"  Although we are driven crazy by this, and we are super motivated to get her to be more specific, although we have tried every single idea we could possibly think up to get her to stop the whole "This one!" bit, it doesn't work.  She still says it, every time.

The same unchanging Janey shows up in ways besides talking.  She is drawn to beds when she has a full bladder, with predictable results.  Believe me, she knows that's not a behavior we like.  Believe me, we have tried extremely hard to stop her from that behavior.  But it continues, year after year after year.  Janey likes to rock in the car to music.  Doing this rubs her neck against the seat belt, and cuts into her neck at times.  I'm sure this hurts, but even that doesn't change her rocking.  Janey stuffs her mouth full of foods she likes, especially salami.  We have tried so hard to stop this---giving her only little pieces at a time, staying near her and constantly reminding her to chew and swallow before taking more, cutting off her salami supply---all to no avail.  

It's hard to understand why Janey persists with behaviors and speech and routines that just don't work well, or actively can hurt her, or that provoke non-positive reactions.  I have to assume it's very, very, very hard for her to change a behavior or label or phrase once it's established.  This worries me.  We are used to her.  We get frustrated, but we love her and accept her, even sometimes through gritted teeth.  But the wider world?  The world without us with her?  I can see how she could seem willful, stubborn, provoking.  I can see how it would be hard for others to understand the depth of her mental barriers to change.

By this point, we've accepted that Janey simply can't change in some ways.  It's not like she doesn't learn when she can.  Anyone who has seen her hands flying using her iPhone or navigating or a web browser, or singing obscure verses of Christmas carols knows she can learn some things extremely well.  And I'm sure she would want to be able to effectively communicate with us; I'm sure she doesn't like hurting her neck or choking on too much food; I'm sure she's tired of our angry reactions to wet beds.  And I know we are motivated to do whatever we can possibly do to try to help her learn the stuck-in-wrong words or behaviors.  We, and she, just can't do it.

What is my message here?  I guess it's to plead for the world's understanding for Janey and all the others like Janey.  They are doing their best.  Those of us working with them are doing their bests.  But as the Serenity Prayers says, even to a non-religious heart like mine, let's all work on serenity to accept the things we can't change.

Here's a picture taken today of my bewildering, beloved Janey.

Why does success have to mean progress?

 Facebook lately gives me some memories to browse every day.  I've been on the site for 12 years now, and it's fun to look back at what was on my mind four, seven, nine or more years ago to the day.  Yesterday, it dealt up something cute Janey said 12 years ago, when she was 5..."Don't put your fingers in ice cream!  That's NOT funny!" which I reported I didn't know the origin of.  I had a chuckle, but then started to think about how such random and funny utterances come up now and then from Janey, and that I'd still be surprised and happy to hear her say something like that today, all these years later.  She hasn't progressed in her speech.  She ebbs and flows, but her talking doesn't get better or worse much as the years go by.

For a minute, thinking about her lack of speech progress depressed me.  She's had so many years of school, of speech therapy, of ABA, of just hearing us talk to her.  Why hasn't her talking gotten better?  Why hasn't she made any progress?

And then I started to think---why is the only measure of success with kids like Janey that they progress?  Why are IEP goals always about reaching the next level?  Why do people (us included) hang on cool things she says to see if they are heralding a new era of talking?  Why does the fact that Janey stays steady with most skills not make us happy? 

Progress, it strikes me, is how we separate groups of kids with autism.  All kids diagnosed as being on the spectrum start out behind in some area.   But the ones we call "high functioning" or "mild" are the ones that learn new skills, that come close to climbing up to the norm, that get with the program quite literally.  Those like Janey, who mostly have a steady state, are by the very fact that they are the opposite of these successes considered failures.  Not that anyone would say that, not that it's what we think as parents, but if you look at measurable progress and there is none---what else would it be called?

What if that wasn't how we measured kids like Janey?  What if her occasional bursts of speech, her momentary shows of understanding we didn't know she had, were just seen as part of her autism?  What if we didn't hang onto the idea that she should be progressing?  What would we use instead to measure success?  What would be our goal?

Happiness.  Pleasure in daily routines.  Connections to others.  Just being herself, and having herself accepted as a meaningful member of society.  That's another way to measure success.

If I use that as my yardstick, I think Janey is a success.  She is happy much more of the time than she is sad.  She enjoys her daily routine---the bus ride, school, coming home to a meal made by Tony, watching her familiar movies, taking a car ride, jumping up and down, running in the driveway.  She has connections to many people---more than I do, probably.  She is loved at school and home, she has fans out in the community---she's a bit of a celebrity at the grocery store.  She is herself, always.  As for being accepted---well, we accept her, her school accepts her, our neighbors accept her.  Wider society---that's still a work in progress, the kind of progress I'm talking about here, and one that isn't her job but the job of said wider society.

I'm asked every year at her IEP meeting what my vision is for Janey.  If I were totally honest at these meetings, I'd say just one thing---happiness.  Let her be happy.  Give her reason to be happy.  Put supports in place so she is happy for all of her life.  That's success.

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.

Looking back on the decade

The end of a year, and in this case, the end of a decade, always prompts us to look back.  I've been doing that a great deal lately.

If I look at 10 years ago now, when Janey was 5, we were heading into some very tough years, years in which Janey was very unhappy and often very angry.  It's hard thinking about those years.  I wish I had known then that things would get as much better as they have.  Janey still is sometimes sad, sometimes angry, of course.  We all are.  But so much more of the time, she is happy, or at least contented.

In thinking about this, I've been thinking about causes.  What made those years so hard for Janey?

One of my leading theories is that during the worst years, the most attempts were being made to teach Janey academically.  Via ABA and classroom work and also at home by me, she was spending lots of her time working on things like letters, numbers, writing and reading.

These efforts were not successful.  At times, Janey seemed to learn a little, to know a few letters or numbers.  At one point around 2nd grade, she could write her name.  But these skills would fade away quickly if not constantly practiced, and sometimes, even when they were constantly practiced.

For a lot of kids with autism, this isn't the case.  I have seen myself the amazing things many kids in classes with Janey have learned.  And of course, we didn't know in advance that Janey wasn't going to be one of the academic achievers.  But I think it could have been predicted a bit more than it was.  I think of how extremely frustrating it must have been for Janey to have to work so much on things that simply were not something she could or wanted to learn.  When I think about that, it's no wonder she acted out so much.

How could it have been predicted?  Maybe by an IQ test.  And I will stop right here, right now, and say I know that IQ is not the only way to measure intelligence. In many ways, Janey is very, very smart.  But IQ tests do measure a specific kind of skill.  It can be said that Janey couldn't be tested accurately, but that in itself is telling.

Janey's IQ was tested at least three times, mostly through studies she was in. I was never given a number.  I guess people thought it would upset me, or that it was meaningless.  But I know she scored lower than the 1st percentile.  I know her IQ is very, very low.  Again, and importantly, NOT her intelligence, but her IQ---a specific kind of skill set.

From my understanding, IQ tests were first developed to understand potential, to see what kind of teaching and classes would be helpful.  I think we could have known early on,based on tests that were done, that what Janey needed was not academic work, but work on her life skills, and most especially work on helping her enjoy the things she IS good at.  I understand in a lot of ways why schools do keep trying to teach Janey and others like her academic skills.  A lot of it is No Child Left Behind type thinking.  But a big part of the reason is hard to put into words.  Trying to, and being blunt, it's that our society places a low value on people with low IQs, people whose strengths are not at all academic.  We try very, very hard to turn people like Janey into someone we feel has more value.

And Janey suffered because of this.  It was not just the school, but also us, at home.  We tried to teach her many things that were beyond her.  We tried to get her to talk more than she was able to talk, to be more perfectly able to use the bathroom than she was able to, to understand rules and rituals that were beyond her.

In our case, it was a dramatic event which changed things---when we almost lost Janey to a burst appendix.  It's the big dividing line in our heads, when we realized how truly precious Janey was to us exactly how she is, when we stopped putting value on what we HOPED she would do and started putting value on what she CAN do, on who she is.

For every child with autism, for every child without autism, for every child at all, there is a different path.  Until our society values people like Janey, we probably will keep trying to put all children on the same path.

What will the next decade hold for Janey?  I hope it holds happiness.  I hope Janey is content with her life.  I hope that for all of you, and all your children.

Happy New Year.

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.

"Kitty" or When Will I Ever Learn?

A lot of my time with Janey is spent doing what she calls "Snuggle on Mama's Bed".  It's in fact her bed, not mine, but we do snuggle.  Generally, we just lie there next to each other and talk.  Or I talk, and sing, and tell stories, and read books, and so on, and Janey smiles and laughs.  She talks very little, most of the time, but she's very happy to just be there together.

Sometimes, this snuggle time can start to feel like a one man show.  It's a very well received one man show, but still, at times I feel like I'm running of material, and I wonder if it really makes a difference what I say or do at all.

Last night, after a good long time snuggling, I said to Janey "You know, I know in your mind you are thinking a lot of things, and listening to what I'm saying, and maybe wanting to ask me things, but you aren't saying them out loud.  I can't hear inside your head.  I can only hear things you say. I love to hear you talk.  If you said 'Kitty' right now, I'd be very, very surprised and happy!"

Some background---Janey loves me to act surprised.  I'll often go through pretend emotions while we're cuddling, saying that I'm going to show happy or sad or angry, but her favorite is always surprised.  I'll ham it up, opening my mouth wide and waving my arms around.

For a few minutes after I talked, Janey just looked at me with a huge smile.  And then she quietly and sweetly said "Kitty!"

Of course, I played it up---a huge show of surprise.  She smiled her huge, wonderful smile.

And then, as I so often do, I had to push her.  I said "You know, if you said the name of one of your brothers, I'd be VERY VERY surprised!"

I hate it when I do that.  And I'm always doing it---looking for just a little more, trying to force Janey to prove again what she just proved, what I already know, that she's almost always listening and understanding what I say, whether she shows it or not.

After I said the brothers line, I saw the look that breaks my heart, the look that shows she's shutting down.  Her eyes lose their glow, and look away.  She looks not happy but instead tense, worried.  She sees that now we aren't playing a fun game, but instead are in the midst of quiz time, testing time.

We stayed there cuddling for maybe ten minutes more, and she never did say "William" or "Freddy".  I made myself stay quiet.  Finally, I said "William and Freddy!  That's the names of your brothers!"  But still, she had the tense look.

Why do I do that?  I KNOW she knows her brothers' names.  I KNOW she listens to me.  Why do I have to get it proven to me, at the cost of her happiness?

And of course this relates to the problems with ABA type programs.  They are all dependent on the child having to prove over and over and over and over that they do know what they know.  In a way, they seem especially designed to torment kids like Janey.  I don't think all kids with autism are like Janey is, in her strong negative reactions to being quizzed, tested on what she's already shown to know, but I think a lot of them are.  Once Janey knows something, she knows it.  She's shown over and over that she doesn't forget anything.  But she's not always going to perform on demand.

I'd like to say I'll never make the mistake I made last night again.  I'd like to think I've learned, and I'll stop pushing her to re-prove she is listening.  But I will probably do it again.  I'm a slow learner, and I don't always remember what I've learned, unlike my sweet girl.

Full Circle McDonalds Trip

This weekend, we spent a lot of time organizing our bedroom, to prepare for a badly needed new mattress.  Some of the work involved heavy lifting and cleaning, so we decided I would get Janey out of the house so Tony could do the work without Janey needing Daddy's attention 100% as she usually does on weekends.  I took her various places, one of which was a McDonalds.  During the meal there, I kept flashing back to another trip to that same McDonalds.

Here's a blog entry about that long ago trip, when Janey was four.  (LINK)  It's a trip that has stayed in my mind for all those years because it seemed like a dividing line.  Before that trip, I often took Janey out and about.  I ever said in the entry "Usually she loves to shop", which surprises me a bit now to read, but I vaguely remember as true.  Janey did, when she was very little, like to go shopping and to be out and about.  We often went to McDonalds and ate inside.  But that day, she had a violent reaction to something, and for one of the first times, tried to bite me, and succeeded in biting her own lip and the back of the chair.

After that trip, I didn't take Janey out much on my own ever again.  It wasn't safe.  We did a trip here and there, but overall, I just didn't.

Now, eight and a half years later, I do again.  Finally again I feel safe taking her places.  I have enough confidence in her ability to stay calm and my own ability to calm her if she doesn't stay calm that we are going places, fast food places and short trips to stores and yesterday, swimming at a Y for summer autism free swim.  The trip back to the McDonalds was smooth (besides them giving me a burger instead of grilled chicken in my sandwich and me just eating it rather than trying Janey's patience by returning it).

However, the trip also highlighted to me another change.  Janey is not talking much lately.  Her calmer behavior seemed pared with less activity overall.  During the meal, she said exactly one thing, an echoed "23" when I commented that the number of the marker we had on our table was 23.  She ate in silence, despite my best trials.

When I read back about the long ago trip, it is hard in some ways to read what she said long ago after the trip----"I heard a clicking sound, and the clicking sounded like BOOM! I heard a footprints sound"  All these years later, a sentence like that is basically unheard of.  It's quite hard often to realize that despite many, many years of speech therapy, ABA and schooling and just getting older, Janey talks substantially both less and less complexly than she did soon after her diagnosis, even during periods of more talking than we are in right now.

I don't think the two are connected.  I don't think talking less and being calmer go together by necessity.  At least, that's not supposed to be the plan.  It's supposed to be that talking, communication, can make Janey calmer---that if she can tell us what is bothering her, we can help.  But back then, she told me that long sentence that I thought was about what was making her upset, and it didn't help a bit.

I don't get to decide, of course, but what if I could?  What if I could pick a calmer but less active and communicative Janey or a more communicative but less calm Janey?  Which would be better for her?  I have no idea.

Another thought that has crossed my mind---maybe Janey talks less now because we have learned more about her.  Maybe she doesn't talk when she doesn't feel she has to.  She isn't into talking just to chatter---she talks when she has something to say, and maybe by understanding more of what she needs, she doesn't need to tell us.  Is that good or bad?  Again, I really don't know.

Whatever the reasons, the reflection on the two widely separated trips to McDonalds has left me with more questions than answers.

Searching for words

Last night, Janey said "I want to watch...." Then she stopped, and I could see she couldn't find the name of the show she wanted.  She started over "I want to watch...", and then did the same thing several more times.  Something about how she was saying it made me not jump in.  She had the look and the sound of someone who is searching for a word, who knows what they want to say but just can't quite bring the word up that moment.

When she started to look upset, which took a few tries, I did what I often do, and gave her a sentence with a blank.  I said "The show I want is named..."  I'm not sure why, but that sometimes makes it easier for her to fill in.  But this time, she didn't.  She kept looking at me, and the look started to break my heart.  It was lost, almost scared.  It was a look that said "Why can't I say this?  Why is what I need to say so hard to say?"

Janey's talking goes up and down.  There are times she talks more, and times she talks less.  We're in a low ebb right now, quite low.  I don't panic over this, because over and over I've seen that the talking will come back to higher levels in time.  But somehow, this felt like the first time she was aware of her own trouble finding words.  I could be reading too much into her look, but over time, I've gotten pretty good at reading her face.

After a few more attempts by me to give her a fill-in-the-blank, she said "The show I want is the show".  I then did what I had hoped to avoid.  I started listing shows she might want---"The show I want is..Angelina?  Blue's Clues?  Beauty and the Beast?   Kipper?  Wonder Pets?  Dora?  Barney?  Courage the Cowardly Dog?   Backyardigans?"  She stopped me there and said "Backyardigans"  So I put that on, and she seemed fairly content.  But still, I got the feeling that she simply was tired of the whole thing, and that she picked a show that didn't sound bad, not the show that she was really thinking of.

I thought about this incident a lot last night and this morning.  I wondered how I could have handled it better.  I wish she could manage the TV remote and pick the show herself, but it's so complicated to use Amazon Fire TV to pick a show that might be on Amazon Prime, Hulu or Netflix, that might be a video we've bought or one that is on the air---all of us have trouble with it.  I could try to get her to watch videos on her iPad instead, but she is very clear when she wants the big TV and not the iPad.  I could have a page of pictures of shows she likes to point to, but she rejects that kind of solution at home almost always, and even if she didn't, the list is limited to ones I think of, not all the ones that exist.

What I really wish is that she could learn more word retrieval skills.  She has a very good speech therapist at school right now, but her time with the therapist is limited, and I have the feeling there might be specific kinds of therapy that most help with word retrieval.  A few months back, I started trying to find a place for her to get outside speech therapy, and found it was far from easy.  There are lots of places that do autism therapies, but they are almost all exclusively ABA, and most word with kids under 13 only.  Janey will be 13 in two months. I have found iPad programs specifically to help with word retrieval, but they are aimed at people without intellectual disabilities, and quite honestly are far beyond Janey's abilities.

Before school this morning, I stopped Janey and said to her "I know sometimes it's hard for you when you can't find the word you want to say.  That must be very frustrating.  I saw how sad it made you last night.  I want to help you with that, and so does Daddy, and everyone at school"  I have no way of knowing how much she understood, but I am glad I said it, and she listened, and smiled at me.

There is so much about Janey that is mysterious to me.  How often does she settle for shows she doesn't really want, food that isn't what she is aiming for, songs playing that aren't really the song she wants, because she doesn't have the words?  Why can she sometimes talk so much more than other times?  How is it that she can remember endless song lyrics, or show dialogues, but not sometimes simple titles or names?  How can I help her?  And sometimes I ask myself the hardest questions of all---how is this fair for her?  Why does she have to struggle to be understood?  What would her life be like if she could talk more readily?  Those last ones don't have answers, I know---or if they do, they are beyond my own word retrieval skills.

Janey is not materialistic, and that's a problem

If you look up how to get a child with autism to do something they aren't inclined to do, there is almost always the same answer.  Use a motivator.  Use a reward.  Give it consistently for the target behavior, and not at other times.

When thinking about this, I thought at first "There's nothing that motivates Janey consistently"  But that's not really the case.  There is a lot that motivates Janey, but there is almost nothing that can be given as a reward to her easily.  There is a lot she loves, but not a lot that I would be able to only give her as a reward.

A typical rewards chart

What does Janey love?  What motivates her?  Silly attention, as the first thing that comes into mind---joking around with her with funny voices, or little games.  She lives for things like playing Creep Mouse or pretend tickle or high five with the whole "too slow" routine.  She adores those games.  But she doesn't adore any single one enough for it to work as a motivator for something like ABA or toilet use.  And I can't, or won't, withhold playful attention, the main way she likes to interact, to be something she only gets when she performs.

She loves music, of course.  But there isn't a certain song that would always be a reward.  She likes variety.  And it's not a case of any music.  It's not like she'd be willing to work to hear something she doesn't like or care about.  And again, I would never withhold music, her basically only hobby, from her, hold it out to get her to do what I want.  That would be cruel.

She loves food.  And I'd be fine with having some certain food be a reward for ABA or the like.  But there is no one food she's always into.  Some days, she adores chips or M&Ms, other days, she could care less about them.  Even the kind of foods that could work at home but not at school, like bacon or home fries, are not always something she wants.  Like most of us, she is in the mood for something different on different days.

Trinkets still motivate ME!

What about toys, or stickers, or beads, or something like that?  No, not at all.  She enjoys me looking at her sticker book with her, but actually putting individual stickers in it, or getting stickers as a prize---no interest.  There is not really a toy in the world she cares about.  In fact, there is not really any non-food physical object she is motivated by.  She is not materialistic, in the true meaning of the word.  Material things don't much interest her.

She likes a car ride, but not all the time, and in practicality, it's not something that would work as a reward---certainly not at school, and not all the time at home.  We are not going to put her in the car at 10 at night for using the toilet.  And it isn't practical to tell her she can't have a car ride until she does certain things.  Sometimes, we need her to go in the car.

As does candy...

I know that many kids with autism have a special interest---something that is hugely motivating to them.  And it seems like most programs to teach kids with autism skills count on this.  I don't know if Janey is unusual in there really not being a motivator for her that is usable as a reward.  I know she's not totally alone there----I'm thinking of you, Lindsey, and wondering if others have experienced this with their girls.

In some ways, I admire Janey.  She doesn't have the monkey on her back that almost all of us have---desire for what we don't have.  The things she loves most in life are free things---playing silly games with Mama or Daddy or her brothers, listening to the right song at the right time, being out and about and seeing the world.  But today, as I walked around the Target and looked at all the toys and snacks and stickers and countless things that would have been a huge reward to me (and still would be, to be truthful), I wished very much that teaching Janey could be achieved with something I could buy.

Baby Bubbles

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

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

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

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

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

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

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

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

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

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

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

Re-evaluating Janey

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

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

I'm not sure I'd go that far, but it's the only image I found that worked at all!

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

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

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

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

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

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

Things I can't think about...but I do anyway

If I want to sleep at night, to ever let Janey out of my sight, to not spend my days in worry beyond worry, there are certain things I just can't think about.  And most of the time, I am able to do that.  But not always.  Sometimes, those things are in the news, or something happens that stirs up the thoughts, and wham...I am thinking.  Boy, am I thinking.

If only the brain had an off switch...

You all probably have read about the policeman in Florida who shot a caregiver of an autistic man, and explained he was actually aiming for the man with autism, and missed. (link here)  There's a lot to process there, but my mind went to the many times Janey's lost it in public.  I can picture her trying to hit or bite a caregiver, or Tony or me or her brothers, and what it might look like if a law enforcement officer came across the scene at the height of it.  I think she's a little protected just by being female, because right or wrong females seem to be seen as less of a threat, but still...my thoughts are not ones that are easy to think.

My friend Michelle and I have joked a lot that we have to live forever.  And the joke is partly a way to not face the reality that we won't, and that some day, our children will not be in our care.  Both our autistic daughters have two siblings.  For those siblings, the knowledge that they will likely someday play at least some role in Janey's or Lindsey's lives---I won't speak for them, but I am quite sure that knowledge plays a role, if even subconsciously, in their life planning.  But the alternative, a group home---well, that is something I try not to think about.  I am sure there are good, even great, group homes out there.  I know there are.  But there are others that are not as good.  This article (link here) about group homes in Massachusetts was not an easy read.

Janey's current psychiatrist told Tony and me in very clear, certain tones that Janey is at extremely high risk for abuse.  I feel like throwing up every time that thought comes into my mind.  He said girls who are non-verbal have a rate of abuse that is so high that it's almost a certainty.  Well, what do you do with knowledge like that?  I have to feel glad, here, that Janey lets people know when she doesn't like what is being done.  I want her to keep that voice.  The other day, for some reason the word "tap" came up in a conversation Janey was listening to.  Immediately, she said "tap" and tapped her head.  I know that is something taught in ABA.  I know the reasons for that kind of teaching, but I'll be honest---it was a bit troubling to see.  Do we really want our kids to respond instantly when told to do something?  

I am lucky.  I feel as close to total confidence as I can feel in Janey's schools. She is safe at home.  She is loved and cared for.  I wish I could simply close out the worries, the fears, the thoughts.  But I can't.  I don't think any of us who love a child with autism can.

Summer school and some thoughts

Janey started summer school this week.  I was nervous about summer school when I found out she would be going to a different school than she does during the regular school year.  This is because she's technically in 6th grade now, and her regular school only has an elementary school summer program (although it goes to 8th grade during the regular year).  She is attending a middle school a ways from our house.  There was an open house last Friday, and we took Janey.  After going to the open house, I no longer felt nervous at all.  We found out Janey's teacher was going to be the husband of one of the most wonderful people we've ever had work with Janey---an ABA supervisor whose known Janey for many years and is the person who actually visited her in Rhode Island when she was at the hospital there.  Any husband of hers was okay with us, and he seemed great---like someone who would understand Janey and like working with her.  We also met the ABA therapist assigned to her for the summer, and she knew Janey from way back at her original school, and seemed great.  The administrator of the program met us as we came in, and was enthusiastic and very good with Janey. It was a huge relief to meet them all.

For the first time ever, I think Janey was truly looking forward to summer school.  I don't mean just it was the first time she looked forward to summer school, but the first time she's understood enough to look forward to anything.  She woke up excited on Monday, and when I asked her "are you happy you're going to summer school today?" she smiled hugely and said "YES!" in an emphatic voice.  She wanted to go out and wait for the bus about two hours before it was due to arrive, but I held her off until about 20 minutes early.  When the bus came (on time!) she jumped on with complete confidence.  I love it that all three of my kids don't seem to suffer from the social anxiety I have.  None of them has ever had much trouble separating from me.  I thought about how I would have been at age eleven in Janey's position, going to a new school.  I would have been a wreck.  I don't think it's Janey's autism that makes her different than me in that way, at least totally.  It's her personality, and I love that about her.

In thinking about this past week, I kept thinking about WHY things seem easier now.  It's partly because they ARE, but if I take any day this week, I could find examples of very tough behavior from Janey.  There's been screaming, the loud piercing scream.  There's been arm biting, lots of it.  There's been "toileting incidents".  There's been hitting of Freddy, who seems like her go-to person when she is angry.  There's been obsessive changing of TV shows, and meltdowns when I didn't understand what she wanted.  There's been, in fact, most of the behaviors she's had all along.  But if I thought of the week in a quick summary in my mind, I'd say it's been a very good week.

I think two things make life seem easier now.  One is duration.  The behaviors happen, but they don't last all day, or usually very long at all.  They happen, intensely, and then Janey recovers.  The other thing is perspective, our perspective.  Not that I want to think we ever DIDN'T accept Janey, but now, it's a different kind of acceptance.  Janey is who she is.  It's hard to explain, but I'm starting to see that parents of autistic kids are often made to feel that their kids are somehow fixer-uppers.  They have potential.  They need to be remodeled extensively, and then, they will be livable and valuable.  More and more, that kind of thinking is bothering me a great deal.  NOBODY is a fixer-upper.  That doesn't mean we are all perfect, if you see perfect as some ideal that doesn't exist.  It doesn't mean we don't need to work on helping our children, ALL our children, learn to live in society.  But in accepting that Janey is not some project, not some house that needs to be gutted and remade, we can also accept that there's going to be screaming, there's going to be arm biting, there's going to be times that are tough.  They don't last forever, and there are also times that are great.  I'm not pretending that the challenges of autism are easy.  They aren't.  I'm not saying that Janey is not, overall, more of a challenge to parent than most kids.  She is.  She is very, very challenging, often.  But all that doesn't make her less of a complete person.

Now I will go and try to explain to Janey why Netflix no longer carries "Hercules", and try to calm her meltdown over that.  I am tired of the daily battle over that issue, but it will pass, and it's part of what makes Janey Janey, the Janey that fascinates, frustrates, confuses, intrigues and captivates me, like her brothers, like all kids.

Thoughts on vacation and school

Janey's April vacation was a good one.  We didn't have a lot planned, and most of the days were just Janey and me hanging out, watching TV or reading or playing outside.  We had two nice visits with my friend Maryellen, who Janey adores, and one outing for shopping (clothes, which Janey tolerated for FIFTEEN MINUTES!) and ice cream, but mostly we just did not much. 

Janey doing one of her favorite things!

By the end of the vacation week, I noticed something I often notice after times when Janey and I are at home a lot together.  Her talking increased a good deal.  She had been in a low ebb for talking, but by weeks end, I was hearing longer phrases and new words.  At one point, outside, I said "Look at my flowers, Janey!" and she said "The daffodils!", a word I had no idea she knew.  She was stringing together thoughts, like "want to go on the bed and snuggle under covers?" It just felt like we were communicating better than we had in a long while.

Janey's outbursts were short during vacation, and pretty easily dealt with.  I read a book about adopted children with attachment disorders.  That isn't what Janey has, as she isn't adopted and I don't think she has an attachment problems, but the strategies for dealing with that problem interested me, and weren't too different than I do anyway.  Mostly, it involves keeping calm when the child is not calm, and not ever using things like time out---instead, giving more attention when behavior is tough.  I've been trying that, not as something I'm going to always do, but trying it, and it is working well.  When Janey screams and bites herself, I say "I think you need a snuggle time with Mama" and often, very quickly, Janey is happy and smiling.  With her outbursts, it's a matter of whatever works, and it was nice to have that working for now.

I was interested to see how Janey did with school starting again.  I very much like Janey's teachers and therapists and everyone I've met in the autism program at her school.  But sometimes, I'm starting to wonder if just the whole structure of school is tough on Janey.  School is not really designed for someone like her.  I don't think she enjoys ABA, or any kinds of art type activities, or almost any structured learning.  She likes music, and being outdoors, and taking walks.  They do those things at school as much as they can, but she is not the only kid in her class, and they are charged with teaching her, not just keeping her happy.  

This morning, Janey was not at all eager to go to school.  That is new for her.  She almost always like going places, almost any place, and she's always been eager to get on the bus.  Today, she asked for a car ride right as she got up, and was very upset we told her it was a school day.  She seemed to resign herself after a bit, but as I watched her head to the bus, she looked grim, stressed.

Sometimes, that mean voice in my head which is my own judgemental side says "if you were a GOOD mother, you'd homeschool her!"  Well, that is not going to happen.  Janey needs school, and I need the respite that school provides.  Even with a good vacation, I was extremely ready for Monday to come and school to start again, and I feel quite sure Janey would be very sick of being home with me after not too long at all.  But I wonder what education for Janey would look like in an ideal world.  I am so lucky in that I honestly have never had a teacher for Janey I didn't love, and who I didn't feel loved Janey.  That's not the issue.  It's the whole structure of school.  School is set up for learning, not for life skills or for learning to do things that will provide lifetime happiness.  The goal at Janey's school, which has two parts, really, a "regular" part and an autism part, is stated as "We believe every student will attend college"  I do think they realize this is not a realistic goal for Janey, but my point is that the "normal" school model seems to be more modified than replaced when designing programs for kids like Janey, and that just doesn't always make sense.  This is a systemic problem, not a problem with Janey's specific school.

I'm doing a very lot of thinking lately about school and Janey, and about how I can be prepare her for the future.  I want to honor who she really is in this preparation, not a mold that doesn't fit her.  I hope I can figure out a way to do that which will work for her and for us.

(Good) Time(s) in a Bottle

The last week with Janey has been wonderful.  She's been in truly a delightful mood.  We've gotten very good reports from school, she's laughing and happy at home, she did not have a tantrum ALL weekend last weekend, she is sleeping well and eating well and being as sweet as she can be.

I was thinking about the old Jim Croce song last night, and wishing I could save this time in a bottle.  Of course, we hope it lasts forever, but it won't.  I'm not being negative in saying that, I'm being realistic.  Janey's moods are extremely cyclical. A few weeks ago, we hit quite a low, and now, we are in a high.  And I don't think anything we do or not do has much impact on these mood cycles.

With Janey, everything works and nothing works.  When she is happy, everything works, all the ideas we have as to what keeps her happy.  She is happy with a routine, with lots of music, with plenty of car rides, with her favorite foods, with our willingness to change videos for her constantly, with being outdoors, with lots of attention.  When she is unhappy, none of those things help.  When she is happy, NOT following routines, or taking rides, or having a lot of music, can make her a bit upset, and we start to see the edges of unhappiness creep in, like arm biting or a worried face.  When she is unhappy, not following the routines is a disaster, but sometimes only to a small degree over the constant disaster-like unhappiness.  It makes me wonder how much we really affect her moods at all with what we do.

I don't know how common it is with autism to have such severe mood swings.  Much advice about autism seems to assume that behaviors have causes that are external.  This can be frustrating to me to read or hear about.  If you look at what works for Janey from a perspective of ABA type thinking, thinking that behaviors have reasons, you get very inconsistent results.  On days she's happy, you might think you've figured it all out.  I've fallen into that trap many times, even knowing what I know.  I think I've figured out a breakthrough, only to realize all I've done is helped a bit with a bump in the road in a day that is overall happy.  When I try to use the same approach on a bad day, it's completely useless, or helps only to turn Janey's behavior from "Should we go to the emergency room right now?" bad to "I think we might be able to make it through the night, just barely" bad.  It's like turning on a bright light in a sun-filled room, or taking away the light of one star on a starry night.  Neither of those things greatly change the already set general level of light.

So we are left with just riding out the storm, or in the case of the good times, enjoying the ride.  You can't put time in a bottle, but I wish we could.  I'd store the last week until eternity comes, and again I would spend it with Janey.

The divide

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

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

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

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

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

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

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

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

The first week of school

Janey has finished her first week of school, and so far, pretty much so good.  The start of school is almost always a good time for her.  She has a honeymoon period every year, where I am sure her teachers think "This is the girl I've heard so much about?  She's a piece of cake!"  Things often start collapsing around mid-October.  I feel like I'm being negative to say these things, but the pattern is pretty unmistakable.  But we do enjoy these early weeks!

The bus comes around early, around 6:30.  Janey's sleep hasn't been perfect.  Last night and 2 nights ago, she woke at 3, never to go back to sleep.  It is amazing how she never seems bothered by that lack of sleep, whereas Tony and I are very much bothered by it.  She seems to wake in the same mood she went to sleep in, and she's been cheerful lately, so she wakes up cheerful and ready to start the day, oblivious to the fact it's dark out and her parents seem oddly unresponsive.

Janey's school runs a little longer this year than last, as they have added 40 minutes to the school day.  She get home on the bus around 3.  So far, she's hopped off the bus in a good mood, which is always nice.  Her first act after getting home is to fling herself on her bed, and the next is to take off her shoes and socks.  Then, she eats.  She eats and eats and eats.  She gets school breakfast and lunch, but she doesn't much like them.  We've tried sending in food, but she never eats that either, and in Boston, school food is free, so we figure she might as not eat free food as paid for food.  But she gets home hungry.  It's amazing how much that girl can put away and still stay slim.  She's gained back the weight she lost being in the hospital, but she's still quite slender, despite eating like a sailor.

The one problem so far this year was a report on Friday that she had hit the bus monitor the day before.  We think the issue was that they put her in a seat next to another kid, not by the window.  Janey loves almost any length of car or bus time, as long as it keeps moving and she can look out the window.  It's a testament to what you can get accustomed to that we didn't get really that upset about the hitting report.  I don't want her hitting anyone, but we have learned as the years go by there isn't a lot we can do to stop it.  We of course tell her over and over that she can't hit people, and she can recite that back with a voice that sounds sincere, but when the urge hits her, she hits.  The best we could do was to tell the bus people that a window seat would be best, and they listened and are now putting her by the window.  I think everyone learns after a while with Janey that it's often a lot easier to modify her surroundings than her behavior.  I feel like this summer, we finally really learned that lesson ourselves.

Janey doesn't tend to learn anything academic at school.  I have pretty much accepted that.  It's not for lack of trying, and of course, who knows what she is picking up and not showing that she is?  If she is happy at school, the truth is I honestly don't care if she learns academics.  What I do care is if she is frustrated trying to learn things she just can't learn.  I have more doubts about ABA all the time, in Janey's particular case.   I don't think it's worked for her, in just looking at what programs she was being taught at the age of 4 and now at 11.  They aren't much different.  She is not motivated by ABA, or by any rewards she is given by it.  If she wants to know how to do something, she learns it near instantly.  I showed her only once or twice how to push the "3" on the TV remote to get it on the right channel for videos.  She shows no sign of knowing which numeral is which under normal circumstances, but boy, does she know that 3.  She knows which song is on which CD in the car, and what order they are in, and the lyrics and tune for every song, I truly think, that she has ever heard.  Those are the things she cares about.  I wish I could make her care about learning to read, or, as I sometimes suspect, make her show that she already CAN read, but, and I am seeing a theme here, you can't make Janey do a lot she doesn't want to do.

So, another school year has started.  It's strange, with Janey the only child home, but otherwise, it feels pretty familiar.  My main hope for the year is no hospitalizations of any kind---that Janey can attend school all year without interruption.  I think that's a reasonable goal.  As the years go by, we become more rooted in reality.  Acceptance isn't just a catch word, it's the only real way to stay sane, I think.  We accept that Janey is who she is.  We try to respect who she is, and work with who she is.  Like with any child, we rejoice in parts of her personality and despair of others.  Trying to change a child, a person, any child, any person, is an exercise in futility.  That's the biggest piece of knowledge being a parent of three very different, very intense, and very cool kids has taught me.  Work with what you have, and love them as they are.

The Quest for Help

The big 11th birthday is over.  It was a good one, truly.  Janey was happy most of the day.  Our dear friends invited us to a BBQ/Birthday/Going off to college party, and we all had a wonderful time.  Janey lasted there longer than I think she has at anyone's house for years, with just a little break for a car ride in the middle.  She adores my friend Maryellen and her daughter Julia, and we are so thankful as always for friends that value and love Janey.  Freddy had a very good birthday too, and we felt quite happy about how the day went.

The night was another story.  We realized, way too late, that Janey had had far too much chocolate during the day.  She didn't sleep, not a wink, until about 4 am.  She wasn't tired at all.  She didn't scream, much, but she didn't sleep.  It was like it was daytime for her.  Tony and I traded off shifts and both wound up exhausted.

We couldn't sleep in this morning, as we had a 8 am appointment at the Lurie Center, the autism clinic.  We'd put off the appointment several times due to Janey's illness, so we needed to go.  We dragged ourselves out of bed and made it on time.

The doctor I saw (mostly just me, as Janey wasn't having any of it and only lasted about 3 minutes before Tony had to take her out of the room) was the same one we saw before, a very thoughtful and knowledgable woman.  We talked mostly about medication, and ideas she had for ones that might work better for Janey.  The problem is that very rightfully, a child should have only one psychiatrist prescribing medication, and Janey has the psychiatrist she'd had since she was 5.  We need to make a switch to use the Lurie Center for medication, and we aren't sure what to do.  I think the Lurie Center knows more about autism---I know that, really, but we like Janey's current psychiatrist and he's always been available when we needed him.  And we are never sure about medication, and tend to be very conservative about it, so we need to make some decisions.

The other talk, just briefly, was about help and respite.  Basically, we went over the fact there is none.  Starting this fall, Mass Health will cover ABA.  The problem is, ABA isn't respite.  It's a very specific kind of teaching that more and more, I don't think helps Janey at all, and might actually hurt her.  It's well meaning, it's often extremely skillfully done, but reading school reports and looking at what 7 years of ABA have actually done for Janey---well, I don't think adding more of that to her life is going to help anything.  It's certainly not going to reduce her stress or our stress.  So---basically, more ABA isn't going to do a thing to help.

I jumped on a few opportunities our local autism agency posted, without thinking them through too well.  They were hosting an evening at the Children's Museum, just for autistic kids.  That might be okay.  It's certainly not respite, and getting there will not be easy, but it's something.  Then, there was actually a drop off, one to one program.  In my delight that something like that was offered, I RSVPed right away.  Finding out more about it, I realized it's in a place only accessible reasonably by public transit, and not directly by that without changing trains, and that it's to go to a plaster craft activity.  I can't take Janey alone on the train.  She will have no interest in plaster crafts.  I'm still going to try to go, because the lure of 2 hours of respite while she's at the program draws me in, but I will need to bring someone else with me, and I am very worried Janey will not make it through the time, based on the last time I attended an activity, with both Tony and me THERE.  She was the only child I saw there who needed to leave, basically because she was kicking me in the head.  The third activity is a field day, not drop off.  I will try it.  I am glad there are activities, and I hope they work, But 11 years of Janey have led me to a deep form of realism about such things.

Today, we got the back to school information.  I had planned to sign Janey up for after school this year.  We didn't last year, because it was only going to last until 4:15, and Tony wouldn't be able to drive there to get her.  The drive is at a very busy part of the day, across town, and increasingly, I can't drive if it's dark at all.  But this year, it was going to run later, until 5:15, so we planned to try it.  The flyer in the material today said the program will have a 17 to 1 ratio.  I called the school and talked a minute ago to the very nice director of the program, who informed me that due to a lot of budget cuts, they are unable to serve kids that can't work under a 17 to 1 ratio.  She did understand that means basically NONE of the kids with autism at Janey's school can attend the program, not just Janey.  Some kids in her program could handle maybe a 5 to 1 ratio---not every kid needs one on one like Janey---but I don't think there's many autistic kids at all that can be in a program with a 17 to 1 ratio!  I asked her if she knew of any people I could call to try to get them more funding, and she said she appreciated that and would look into it for me.  About half of Janey's school, 19 classrooms, I believe, are for kids with autism.  It's kind of sad that the city won't fund afterschool for them.  And kind of a blow to our plans for using afterschool for respite help.

Reading all this back, I worry I sound like I'm being a no-win kind of person.  Instead of saying "Wow!  Now Janey can get ABA and go to a art activity and after-school!  They are all open to kids with autism!", I am saying none of them will likely work for Janey.  This brings us back to the doctor this morning, who completely understood what I was saying.  She said the big umbrella of what is currently diagnosed as autism very often doesn't cover the kids at the extremes.  There are many, many kids with autism that would be, and are, very well served by what is out there.  But for a child like Janey, with a severe intellectual disability, with self-injurious and aggressive behaviors, with tantrums and limited speech---well, anyone who has spent more than a few minutes with Janey gets it, right away.

This is a long entry.  If you got this far, thank you!  I am half working this all out in my head.  We'll keep on questing, and keep on writing about it.  Meanwhile, the birthday love so many of you sent our way keeps us going!