How would we have done it?

One phrase that I think most families with special needs children don't like is "How do you do it?", sometimes phrased as its twin "I don't know how you do it!"  We know the phrase is usually meant in the kindest of ways, and that it's an acknowledgement of some of the struggles our families can face.  But it can feel hurtful in a couple ways.  One is that it makes it seem like our child has created a situation so difficult that others can't even imagine what it would be like to live our life.  Another is by saying, in a way, that we ARE doing it, by making us somehow separate, set apart, somehow as a family unit handling it all ourselves, and not in need of help, due to our superhero status.  Both views of our families are untrue and unhelpful.

That being said, lately I've been thinking a version of the "How do you do it?" myself.  It's in the form of "How WOULD we have done it?"  How would we have handled this pandemic, this lack of school, this isolation, during what I always think of as the Tough Years---approximately from when Janey was 5 until 10?  Those years...wow.  Those were the years in which an inclusion school which aimed to include all special needs students realized they were not up to including Janey, and then, while in the autism program she moved to, she was so unhappy and angry that the day came that I got the call that she wasn't even safe to go home, that we needed to come to the school to go with her by ambulance to the emergency room, the start of an ordeal which include six horrible days at Children's Hospital and 3 weeks of Janey being in a psychiatric hospital.  Those years featured many, many days where Janey screamed all day, literally, days when she bit herself hard, days when she cried heartbreaking tears for hours, nights of her fury and sadness that seemed like they would never end.  But during those years, there was school.  We had about six hours a day when we could sleep (or often, just I could---Tony was working, most of that time at a job an hour from home, and how he ever lived through those years I'll never know), recover, breathe, know that she was cared for.

But what if the pandemic had been during those years, and there was no school?  I think about that all the time, and I truly wonder how we could have done it.

Of course, the thing is, lots of other people with children with severe autism are living through those tough years right now.  And I think about them, all the time.  I think about how it must feel to have a child so desperately unhappy, and to be trying so very hard to help them, and having absolutely no respite---no school, no activities, no nothing.  I think of them trying to think of ways to fill the days, and to get some rest.  I think of the siblings, trying to learn at home in a household that might be often filled with screaming or hitting or crying.

If COVID-19 had happened during the Tough Years, I have to say honestly that I would have sent Janey back to school the second school was open, even if I wasn't sure it was safe, even if I had huge fears about the virus.  I would have sent her because I would have known that we simply had to---in order to stay sane---not just us as parents, but her too.  I would have taken the risk, the possibility of sickness weighed against the absolute knowledge of what more time at home would be like.

This knowledge is why I am not sure how I feel about schools staying closed. If we lived in an ideal world, I would feel sure they should stay closed, but we don't live in that world, and I know there are families out there right now just barely hanging on.  I think about the teachers, with families of their own often, and I know they will be put at risk going back to in-person school, as well as the aides and lunch workers and bus drivers and therapists.  I worry about all of them.  But I can picture most, of course, the situation we have lived through, the child who needs help so badly and the family so extremely stressed by that child's needs, and I worry so much about how they are managing to go on. I know some of you reading this might be living that life right now, and feeling like you are very alone. I wish I could help more. I wish I could come to your house and take care of your child for a day or two, so you could sleep and recover. I wish I had magic.I wish I could fast-forward your life to calmer years.  But right now all I can do is tell you I am thinking of you.

We are so lucky.  Janey, at almost 16, is happy most of the time.  Aside from a period of adjustment at first, and from the days she got upset by Zoom meeting school, which we will no longer do, she has been a champ during this time at home.  We are enjoying her.  Most of that is just her maturing.  Some of it is changes we made, changes in our expectations of her and also changes in our lives.  Tony retired early, which has been a financial challenge but without a question absolutely a right decision.  The boys are older.  We are okay.  We hope that Janey can safely go back to school at some point, because she loved high school, but for now, we are okay.

I hope all those in the places of decision making do give a thought to those who are in the Tough Years of severe autism.  I hope we can find a way to help those families get through this.  I won't say to them that I don't know how they do it.  I know how they do it.  They do it day by day, hour by hour, minute by minute.  They do it because they love their kids, their amazing kids.  But they need help, and we as a society need to figure out how to help them, especially in these extraordinary times.

With love to the school I didn't want

Today is Janey's last day of 8th grade, the last day at the school she's attended since the middle of 3rd grade.  And I am looking back with love on her years at a school I didn't want her to go to.

Janey and her classmates

Until late in 3rd grade, Janey went to an inclusion school.  It was the same school William and Freddy went to, and it was a special place.  Each classroom had a regular ed teacher as well as a special ed teacher.  Kids with all kinds of special needs were included, completely. I loved the school, and I loved the concept.  I loved everything about it, right up until they couldn't include Janey any more.

Janey getting her diploma!

The time of transition to the school Janey is attending her last day of today was very, very hard for us.  It was the time I found out that the phrase "crying yourself to sleep" can be literal.  I had pictured Janey at the inclusion school until she was 22.  I had been involved with the school for 13 years at that point, and I wanted it to be 13 more.  But I know now that it was the right decision to move her.  Inclusion is wonderful, but it doesn't work for all kids.  At the time Janey was moved, she was often screaming all day, lashing out, pulling hair, biting.  She had the love and support of her classmates and teachers, but she was far from happy, and she was (although I know you aren't supposed to worry about this, but I do) keeping the other kids from learning.  She wasn't included, because it wasn't safe to include her, and so an inclusion school for her was not at all inclusive.

So we moved her to her current school.  It was hard.  But from the very first day, we were made to feel welcome there.  It was a different feel of school.  It's a much bigger school, less family-feeling, but it was a place that accepted Janey, and embraced her.

Help when she needs it

Janey's early years at her new school were not smooth ones.  I've never, ever forget the call---the day her behavior was so extreme that she went right from school to the emergency room, and then to many days at a psychiatric facility.  But I'll also never forget the love and caring the school showed her at that time---how her teacher rode in the ambulance with me, how the ABA director drove the long drive to where Janey was placed to see her and talk to the staff, and most of all, how the school welcomed her back.  That is, I can see now, what scared me most.  Janey had already been once cast out for being simply too...autistic.  I was braced for it to happen again, for the school to say they simply couldn't handle her.  But they seemed surprised I would even ever think that.  They were committed to Janey.

Music bonded these two!

Over the years at Janey's school, we have had so many teachers that were simply amazing, in their dedication, skill and love.  Beyond that, the staff---the classroom paraprofessionals, the therapists, the program leaders, the principal---wow. They are all people who have chosen to work with autistic kids, and beyond that, people that very obviously love our kids, people that get them, people that see them as the coolest, most interesting kids around (which they are).

Another wonderful friend of Janey's

Love and a bond you can see

We went last week to Janey's moving up ceremony.  I can't even tell you how many different people made a point to talk to me about Janey, about the special routines they had with her, about her love of music, about what a kick they get out of her.  It struck me so much how they were talking to me about the same Janey I see---a cool, quirky, at times stubborn and challenging but unique young woman.

And so today, again I am crying a bit about Janey and her school.  This time, it's not about her being sent there, but about her leaving.  Thank you from the bottom of my heart to the Joseph Lee School for caring for and loving my Janey.

How Janey would tell the bus story

The start of this school year was marked by bus issues.  The buses that Janey had assigned to her did not have aides on them, and several times, the morning bus simply drove by our house as Tony tried desperately to wave it down.  He wound up driving Janey to school those days.  The afternoon bus twice drove her home without an aide, breaking their own rule (the aide for Janey is not something we requested, but something the transportation department had said she needs) and twice relied on a school aide kindly riding with Janey so she could get home.  Knock on wood, these issues seem to be resolved, thanks to Janey's terrific principal advocating for her.  Janey is on new buses, ones with aides.

I've been struggling to explain to myself and in this blog why the whole bus issue upset me so much.  Every way I tried to write about it, I found myself reading what I wrote and thinking "Yeah, that doesn't sound like such a big deal"  Then, looking at some pictures I took today, I realized that it's a big deal to me because it was a big deal to Janey.  She loves the bus.  She loves routine.  She loves things happening the way they are supposed to happen.  And the fact that it seemed, on the surface anyway, that the bus department didn't consider it a priority to get her to school, bothered me a lot. 

Janey doesn't talk verbally that much, but she talks volumes with her behavior and her facial expressions.  Here's the story of the bus issues, translated by me.  Forgive me, Janey, if I have made mistakes!

"I am so excited to go on the school bus to school!  I love riding the bus"

"Daddy and I are waiting for the bus. It's coming!  Oh, it's not stopping.  Daddy is trying to get the bus to stop.  Why can't I go on the bus?"

"Daddy is driving me to school.  I love to ride in the car, but this isn't right.  I don't go to school in a car!  Daddy is saying goodbye and I am with my teacher, but it's all wrong.  It doesn't feel right.  I'm crying because it's not the way it's supposed to be"

Not the actual bus that didn't stop, but a photographic recreation!

It is the little things, the small inequalities, the minor, not big enough to make a big deal of issues that sometimes are the toughest.  So the transportation department originally assigned Janey to a bus that by their own rules, she couldn't take?  It's fixed now, so why does it still bother me?  Because it's a million small moments like this that add up to block Janey from being fully included.  It's not just the bus passing her by---it's all the times that the small adjustments that would allow her to ride life's bus with everyone else are not made.

Janey---"Now the bus is here!  I'm happy!  I'm going to school!"

It's the little things that make Janey part of the bigger world.  Sometimes, we have to fight for the little things.

"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.

The Dance!

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

Janey and her wonderful teacher at the dance

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

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

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

Janey joyfully dancing!

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

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

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

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

Pulling the plug on summer school

I decided yesterday to not send Janey to the rest of summer school.  There wasn't that much left---just the rest of this week and then next week, seven days.

The decision wasn't actually that tough to make.  Janey had been consistently resisting getting on the bus every morning.  Waiting for the bus had become rather hellish most days.  Through no fault of the bus driver, the times the bus arrived were very varied.  So we had to get outside well before it arrived some days, while other days, it showed up almost right when we started waiting.  The days it didn't, though, Janey did everything in her power to go back inside.  

Yesterday morning was the worst, although the bus arrived quite early.  But before it did, Janey screamed a lot, bit her arm over and over, and then almost bit me, with only a quick jump aside on my part keeping her from doing so.  Right after that, the bus showed up, and she got on.  She always got on like a stoic once the bus did arrive.  

I had my annual physical yesterday morning.  When I got back, there was a call on the machine from Janey's summer school teacher.  I called him back, and he said that day and the past 4 or 5 days of summer school had been very tough, with Janey screaming a good deal, and he wanted to know if anything at home had been different, like Janey's eating or sleeping.  It hadn't been, but in a rare case of me deciding anything on the fly, I realized this just wasn't all worth it, and I told him I'd decided to keep Janey home for the rest of the session.

When Janey got home, I told her summer school was all done.  She didn't really react, but a few minutes later, she came up to me and hugged me---a huge, tight hug, the kind we almost never get from her.  She didn't let go for a long time.  I'm pretty sure that was her reaction.

The whole summer school debacle brings up a couple issues for me.  One is how it's really impossible to find out from Janey how things are going when she's not with me, and the other is the lack of activities truly open to Janey in the summer (or year round, actually)

When it became apparent this summer that Janey wasn't eager to go to summer school, I tried hard to talk with her about it.  But asking Janey questions is next to impossible.  She never answers open-ended questions like "How is summer school?".  Never.  If I give her choices, like "Is summer school good or bad?", she picks one of the answers randomly, usually the last choice given.  If I give her starter sentences, like "At summer school, I feel...." she will occasionally fill in the blank, but she does so with what she thinks is the "right" answer, not what she actually feels.  For example, she can be screaming her head off, and I say "right now, I feel..." and she will say "Happy" 

I am grateful the Boston schools offer the summer programming they do, but from what I have been able to gather over the years, it's very different than "winter" school.  It's also very much school, not camp.  It is aimed at maintaining academic progress.  The class sizes are much bigger than during the regular year, and the schools are held in whatever building has air conditioning.  Unlike most summer programming for most kids, there isn't really much of a fun component.  So for Janey, it basically is all day in a room with a lot of other kids (based on the kids on the bus, pretty much all other boys), working on academics, which is not something she is good at or enjoys.

The thing is, there's very little in the way of alternatives.  Yesterday at the doctors, I saw a magazine that had a headline "The importance of special needs summer camps" and I gave it a look, just to crack myself up.  As I figured, they were the same old options, camps that in no way would accept Janey, camps that pride themselves on "inclusion", if by inclusion you mean that if your child can pass as not having special needs, they are happy to have them there.  They are not camps for someone like Janey.

And of course, it's not essential someone goes to camp.  I personally hated camp, the few times I tried it.  Summer was freedom, a time to do what I wanted, to spend time with friends, to walk through the little woods across the street from me that led to the harbor where I spent much of my time, swimming and watching birds and reading.  Summer was playing double solitaire with my sister while we listened for our favorite songs on the radio.  Summer was walking the three miles into town to buy penny candy.  Summer was sleeping outside in our woodlot.  Summer was working in my mother's store, and using the money I earned to have my father bring me home a Mister Misty Float, and going outside with a book and making that float last for an hour.  Summer, although never my favorite season, was many things when I was Janey's age, and none of those things are things Janey can do.

In two weeks, Janey will be 13, a teenager.  Instead of her world getting bigger, as mine did as I got older, Janey's world seems to get smaller as time goes on.  Playgrounds and spray parks  don't much welcome a child who looks like an adult among the little ones running around.  Janey can't walk alone to the store for candy, and she probably never will be able to.  She has no friends.  She is not going to spend the night with her friends, laughing until way too late, like I did with Laurel or Marie or Julie or Wendy.  She isn't going to play double solitaire with her sister all summer only to realize that said sister was using a totally different set of rules, and that was why Carrie always won and I always lost, and still, remembering those games during which we hoped uncoolly that the latest Barry Manilow or Dan Fogelberg song would come on WABI, the uncool radio station,  is one of my favorite memories.  Janey's life is very limited.  I know that I'm supposed to think of the bright side, to think perhaps she doesn't see it that way, but today, I am feeling like in many ways, that is a tragedy.  

Writing Raw

I don't normally write when I am feeling raw, when I am not in a calm writing state.  But today I will. I won't get into all the reasons, not to be mysterious but just because it's not always the forum here for that.  But I am feeling discouraged this week, very discouraged.

It's not really Janey's behavior that is discouraging me, but with my other worries, it's the constant grinding feeling of knowing there just doesn't seem to be a place in the world for kids like Janey.

I put an article from the New York Times on my Facebook page---here's a link to it--Link  It's just one thing in a long list of endless things, but it upset me.  It talked about a new program in schools for kids with autism, a program that in many ways is like the school Janey attended for the first 5 years of schooling, an inclusion program.  I liked what it had to say, until I read the line that said "To get into the program, children must be deemed capable of doing grade-level work"  Yeah.  Okay.  Like so many other programs supposedly for special needs or autism, kids like Janey are specifically excluded.  This is something I find over and over and over---camps and lessons and special events and on and on and on that simply don't want to deal with a child like Janey (or if I am being kinder, would like to deal with her but just don't have the resources)

And I will get really cranky here and say I'm sick of hearing that, basically, intellectual disability doesn't exist in autism.  It's not something I hear directly, but something that is often implied.  I am the first person to say that I know Janey has many, many strengths.  I know she understands more than she lets on.  I value her extremely much, AS SHE IS.  It is not necessary to make her something she ISN'T to value her.  She is a child that has a very significant intellectual disability.  It's fine if people choose to not accept that.  But they can't choose to not accept that but then still think they are helping all kids with autism.

What if I said "Janey IS capable of doing grade-level work!" and tried to put her in a class like the ones in the article?  Because, who knows?  Maybe she somehow is!  I can just imagine how that would go over.  It would not.  The truth is, what someone might be capable of is not, in practical daily life, that important.  She could not function in a class like the ones described.  I am not just guessing this.  She used to be in a school with classes like the ones described, or actually, a school far MORE inclusive than the ones described, classes that did welcome kids with intellectual disabilities, but were not able to deal with the full range of autism's challenges.  I wish she still could be at that school..  But she can't, and the school was right to admit she couldn't.

And there are so, so many other things like the inclusion classes the article talks about.  If you ever want a good laugh, do a search for camps in your areas that say they accept kids with special needs or even more specifically, kids with autism.  And then look at the details.  There is almost always a rule saying something like "child must be able to function in a 5 to 1 child to adult ratio", "Child must be able to safely follow routines"  or even "Child must be fully toilet trained"  I'm overstating a bit here, but if camp fliers were honest, they might say something like "Children with special needs accepted as long as they don't have any needs which are beyond those of other children"  Or in other words, special needs children are fine if they don't have special needs.

To me, whenever I feel that the media isn't presenting a full picture of children with autism, when voices of parents like me are silenced because we are "speaking for our children and not letting speak for themselves", because we are "portraying autism in a negative light"---well, to me that feels like the truth of Janey, the truth of children like her is something that is being hidden, something that is somehow too horrible to talk about.  And it isn't.  Janey is an amazing person.  Almost everyone who has met her is drawn to her.  She is amazing AS SHE IS.  She is amazing not because she might have mysterious hidden abilities, she is amazing WITH intellectual disabilities.  And WITH occasional self-injurious behaviors.  And WITH incomplete toileting skills.  And WITH aggressive behaviors when she is very upset.  And WITH very limited speech.  She is amazing as she actually is.  And I will fight until my last breath for children like her to be included, truly included.

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

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

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

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

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

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

"Participate effectively and maintain a safe environment"

I took Janey to a parade yesterday, along with my friend Maryellen.  I don't think Janey has been to a parade since she was three or so.  Overall, she loved it.  Parades pretty much have Janey's favorite features---music, dancing, being outdoors and able to move around and be loud if desired, all that.

For me, a few parts of the day were bittersweet.  A dance troupe played a huge part in the parade, a troupe from a big local dance studio.  I'm not a dance person, but I am pretty sure if Janey had followed a more typical course in life, she'd have been involved in dance.  She's amazing, in that she instantly copied every dance style she saw during the parade and did her own dance at the side of the street.  She got many smiles and waves with her high enthusiasm and her moves.  It was something watching her, doing something I couldn't do for the life of me.  As I watched the literally hundreds of young girl dancers go by, I kept thinking "Why isn't there a place for Janey among them?"  I found a list of dance programs in the Boston area for kids with autism.  I'm glad there are some, but like I've found so often, they aren't for Janey.  Here's what one of them said is a requirement for participating--- "Students must be able to participate effectively in lessons or classes and maintain an environment that is safe for themselves and others."  Yeah.  Janey isn't going to participate "effectively".  She would probably not "maintain" the environment they are looking for.  She would love the class, she would probably learn, but as several of the five for so programs explicitly said, they are looking for "high functioning autism" kids.  And sometimes, I get mad about that.  They have every right to accept who they want to, but damn it, I wish there were programs that said something like "We will work with children at any level of functioning, if they have a love of dance"

I felt encouraged by much of Janey's behavior during the parade.  She's still been in a bit of a manic phase, and the weekend was trying at points, with her often going over the top from excitement to anger and screaming.  But a few years ago, I would not even have attempted something like this parade, even with the wonderful help of Maryellen.  As we walked toward the parade route, Janey ran ahead of me a bit, and I felt so happy she is able to do that now, and I know she will stop when I shout out to her to do so.  She's able to have that little bit of independence, which is a very nice thing for a 12 year old.  She stayed with us at the parade without having to have her hand held, and she seemed to understand that she needed to not go into the street where the parade people were.

There was one moment, though, when I was quickly reminded that I need to always be on guard with Janey.  Maryellen had an umbrella, as it was drizzling.  Janey wanted to hold it, and we think to twirl it on the ground.  Before either of us completely realized what was happening, she moved close to a couple small children and started wildly flinging the umbrella around.  It could have very easily poked and hurt the kids.  We grabbed it, apologized and folded it up.  But she is so fast that it's scary.  Sometimes I'm almost lulled into relaxing for a minute when we are out and about, and I just can't.

Janey watching the parade is in many ways a metaphor for what increasingly frustrates me about life for a child like her.  She can watch, she can enjoy, but she can't really participate.  She dances on the sidelines.  And even on the sidelines, I can for a few minutes just feel like she's any other parade watcher, but if I let my guard down, things can suddenly turn.  I can't ever relax.

Because I am always arguing back and forth with myself, I'm of course thinking "She doesn't know she isn't participating.  She is happy dancing on the side."  And that's true.  Fine.  But imagine Janey belonged to almost any other distinctive group of kids.  And imagine that the group she belonged to was a group simply not welcome, not included, in basically everything.  In the past, we might have said "That's just the way it is.  It's too hard to include that kind of kid.  They don't need to be included to be happy."  Well, sometimes I have a radical idea that Janey SHOULD be able to be included in ANYTHING that other kids are included in.  Or at the very least, if there is an activity that is said to be for kids with special needs, or even specifically autism, that it should include ALL kids with autism.  Sure, it would take some doing.  But why not?  Why can't it be that way?

I do live in the real world.  I think often of Janey's old school, which tried harder than anyplace to live that dream of including all kids, and in the end, wasn't able to do that for Janey.  And thinking about that, even after several years, can make me cry.  I don't have solutions, or answers, really.  I accept, at many levels, that in the real world the challenges of Janey's behavior do leave her out of the mainstream.  But sometimes, I dream of a world where she's truly and totally included.

The Wedding

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

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

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

Janey dancing with the best man

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

Janey on the dance floor--her favorite place!

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

Freddy and Janey taking a walk at the reception

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

A rare picture of my whole family and my parents

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

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

What I wish I could have told the mayor

There was a meeting today at Janey's school to let parents meet the mayor, and talk to him about how the budget cuts would affect our kids.  I appreciated the mayor coming to the meeting (along with a lot of his staff) and I think he's a decent guy.  But a lot of the meeting felt like politics as usual, like broad statements about the future and a vision and tough decisions and a lot of other key words that don't add up to a lot.  We each had a chance to say briefly who we were and what our thoughts were about the cuts (which in Janey's school will result basically in one extra child in each class, bringing the cap in the autism only classes from 9 to 10), but other than that, there wasn't a lot of time for discussion, and what there was, as is often the case, was dominated by a few parents.  I sat there thinking of all I wished I could say to the mayor, if I had his ear.

I'd want to tell him, to start with, that adding just one kid to a class like Janey's is a very penny wise pound foolish move.  I'd want him to understand that Janey hangs on to being able to function in a her classroom as it is now by a thread, often.  She has great teachers and great therapists and a great support staff, a caring principal---we are lucky.  It's not that they aren't doing all they can with what they have, it's more that any kind of classroom is tough for Janey, and for the other kids in the class to get the attention they need, Janey needs someone right with her most of the time.  I've never pushed for a one on one aide.  There are only 7 kids in the about 160 autistic kids at her school that have one (a statistic I learned today).  Janey should probably be among those, and I would guess one or two of those (not kids I know in any way, just a guess) are the result of better parent advocating than I do and not a greater need than Janey has.  If the class has another child, especially a child with a lot of need for supervision, that might be the tipping point where Janey is not able to learn, or not able to be controlled.  It could be a safety issue, or at the very least, a happiness for all involved issue.  I've never pushed for an outside placement, really.  I don't want one.  I want Janey to go to school where she is.  But if it ever became obvious that just wasn't working, I would do what I had to do, and that might cost the schools a lot more than what she is costing right now.

I would want the mayor to understand autism in all its forms.  He used a lot of acronyms, and he has worked with autism groups, but unless he's spent a lot of time with a variety of kids with autism, he mostly likely, in fact almost certainly, doesn't really get them.  He doesn't get the wide reaches of the spectrum, he doesn't get how inclusion doesn't work for every child, he doesn't get how even a small amount less time at school might make a huge difference at home, he doesn't get how a tiny change in routine can be a disaster.

I want the mayor to know he should listen to more than the squeaky wheel.  I think politicians sometimes operate on the assumption that people are going to complain if something is wrong.  Well, if you can't speak, you can't complain.  If you are a parent of a child with autism, and you are just barely hanging on, and you haven't slept for nights, and you have no child care whatsoever, you aren't going to go to budget meetings or rallies.  You need help, but you don't know who to ask or what to ask for.  I want him to want the best for kids like Janey, even if their parents aren't expert advocates.

More than anything, I would want the mayor to know what a great kid Janey is.  I wouldn't want him to look at statistics about a child like her and assume she isn't important.  She can't talk much, she will not go to college, she won't raise your test scores, she won't hold a job.  She is going to need help all her life.  But she is worth it.  She is beautiful, she is funny, she is interesting, she is deserving of love and services and caring and tax dollars.  She is a citizen of the fair city of Boston, as much as anyone else.  I hope the mayor, and everyone else in a position of leadership, understands that every single person, regardless of diagnosis or income or position or ability to demand, is worth caring for.

A full life vs. the trifecta

It's the doldrums of winter.  It's hard for everyone, but I'm realizing that it's harder for Janey than most.  I think the next big challenge we are facing is how to give her an interesting life, a meaningful life, a full life.

I think about myself at age 11, or my sons at that age.  Life gets pretty interesting around that time.  You are old enough to have your own interests and passions.  You have made friends---friends that might become lifelong friends.  You go to their houses and they come to yours.  You are starting to be able to be out in the world by yourself.  You are turning into the person you will be for life.

Then I think about Janey's life at 11.  She goes to school.  She comes home.  That's about it.

There are many, many barriers to giving Janey a more meaningful life.  The big one is that she has the trifecta of autism, severe intellectual disability and behavioral issues.  Any one of those alone is tough enough, but the three together cause barriers to almost any organized type activity we might want to pursue for her.  I can't tell you how many times I've heard about a new possible class or program or camp or so on that might work for Janey, only to look into the details and find that it would be impossible, due to one or more of her challenges.  Saturday special needs city programming?  You have to be able to be in groups of 4 kids to 1 adult.  Music lessons for kids with autism?  You have to already know how to play an instrument and have to be able to read music.  So, so many camps?  You have to be toilet trained.  You have to have no self-injurious behaviors.  Hundreds more promising sounding enrichment activities that are "inclusive"?  Inclusive if your child can follow directions, not run away, read, write, not need constant supervision.  Respite houses for the disabled?  Not for kids that need one on one care.

So I say---okay.  We'll do it ourselves.  We will enrich Janey's life.  During recent snow days, I woke with a determination to give Janey an interesting day, a full day.  And every attempt to interest her in anything other than videos was met by screaming, by her biting her arm, by fury, or if not fury, complete disinterest.  I tried---reading books, playing with toys, involving her in cooking, putting on a children's yoga video, taking her out in the snow---I tried everything I could think of.  Janey was not interested.  Part of this, I think, is that in some deep ways, she's a regular pre-teen.  I'm her mother.  I'm not who she wants to hang out with.  And part of it is the combination of the trifecta.  The autism makes her not that interested in new activities.  The intellectual disability makes it hard for her to understand so much---how to use toys, how to hold a writing utensil, how to understand what is read to her.  And her behavioral issues make her prone to lashing out when the first two kick in.  I try to put myself in her shoes.  What is someone tried to get me to do something that I am not interested in and didn't understand?  What if someone proposed a fun day of doing calculus equations?  I'd be lashing out pretty quickly, and I don't have behavioral issues.

So what do we do?  I don't know.  We do what we can.  Janey's favorite activity is going for car rides while listening to music.  She adores doing that, and we do it as much as we can.  Tony takes Janey on many, many car rides to nowhere, with mix CD playing.  It's wonderful to see Janey during these rides.  She has strong opinions about music.  She doesn't like everything, but what she does like, she loves.  We put a lot of time into finding her new music she might like, and it's time we all enjoy.  But we can't always ride in the car.  I put a video of Janey on my Facebook companion page (I can't figure out how to put it here, but you can see it there if you want) asking for a car ride last night.  It was one of the rare times Tony had to say no---he was exhausted and the car was covered with snow. After the part shown in the video, Janey frantically paced back and forth asking to put her coat on and go in the car---for an hour, until she went to sleep.  It broke our hearts.

I don't have answers here.  I don't know exactly how this problem can be fixed.  But I must keep trying.  Janey needs a full life.  I owe it to her to find a way to give her one.

When inclusive isn't inclusive---the cheery camp booklet

Last week, I went to a presentation at Janey's school, about summer programs, given by people from an autism program at a local hospital.  I hesitated to write this post, because I don't want to put down the people who gave the presentation.  They were earnest, well-meaning and caring.  However, I left feeling like, frankly, their whole presentation had been a waste of my time.

The people from the hospital had made up a very colorful and cheery summer guide.  They made sure we noticed the cute clip art, the little asides and pictures and all.  The core of the guide was a list of 12 camps.  Almost all of these camps were called "inclusive".  A few, instead, were listed as being (and I quote directly from one of them) "for individuals with high functioning disabilities".  One of them said it was for "children with special needs", but then right under that, said "1:3 counselor to child ratio"

As the presenters went through the camps, I felt increasingly depressed.  None of the camps would be a possibility for Janey.  She isn't able to be "included" in the way meant by the camps.  The peppy social stories and advice on talking to counselors would not make her able to attend the camps.  A one to three ratio would never, ever, ever work.

I debated mentally whether to say anything to the presenters about my thoughts.  I know that children in the autism program at Janey's school have a spectrum of abilities.  I am sure many of them COULD go to these camps, and so I decided to keep my mouth shut, to let them get the benefit of the presentation.  Thankfully, one of the autism program directors from the school spoke up and asked the question I had been so much wanting to.  She explained that some of the children in their program had very high needs, and asked if any of the camps on the list would be able to handle that.

The presenters were a little flustered, I think.  They said no, the camps probably wouldn't to able to handle that.  The woman from the school asked if they knew of a camp that could.  They mentioned a camp that "might be able to".  I then spoke up and asked about why that camp wasn't on the list.  They looked at each other uncertainly and said they weren't sure why---that maybe the camp wasn't really for autistic kids.

I am not trying to be mean to these hospital employees.  I don't blame them.  I don't blame anyone, really.  But the guide they gave, and their initial "There's so much out there!" vibe are part of a huge problem.  There is a giant divide between what one of the camps called "high functioning disabilities" and Janey's type of disability.  The general public doesn't, for the most part, understand this.  They might look at a booklet like the camp one and think "Wow!  I almost wish MY child had special needs!  Why do these people whine so much?"

Fortunately, Janey DOES have a summer program.  She goes to summer school right at the same place she goes to winter school---at the public school she attends.  Kids with a very high risk of slipping backwards during the summer get summer school, by law.  The law doesn't say how MUCH summer school they get, though.  This summer, the school will be only 4 days a week, for 5 weeks.  20 days.  The summer has a lot more days than that.  Just a few years ago, the program was 30 days, but I guess our kids, our very high need kids, are not a budget priority.  I wonder if someone up there in the decision-making office thinks "Well, there's plenty else out there for them to do in the summer!" while looking at the same cheery little booklet I am.

I want to end this with a huge, giant, heart-felt thank you to the teachers, aides, program directors, ABA therapists and more that work at Janey's school (and those who worked at her old school and worked for so many years to practice true inclusion).  They don't get the glory, but they are the ones that truly do accept everyone.  Inclusion, in my new thinking of the word, means being able to say "Yes!  We welcome your child!  We will meet their needs!" And it matters to me really not at all if this is in a classroom or camp with no "typical" kids at all.  I'd rather have her accepted than not included in "inclusion"

A trip to the library

As many of you who have joined the Facebook page "Rarer in Girls", which is a companion to this blog, already know (and as an aside, if you would like to join, you are welcome, if you'd like breaking Janey news but much more importantly, some great discussions with terrific people!), Janey did something very cool yesterday.  She found my pocketbook, took out my wallet and located my library card, which she brought to me and said "Want to go to the library?"  That was a surprise to me on many fronts.  She had never before expressed an interest in the library, but more, I had NO idea she knew what a library card was or what mine looked like.  I was truly stunned.  And happy---I love the library!  So I told her we would go after school today.

However, that plan got moved up in the day, due to Janey's bus never showing up.  This was supposed to be the legendary, much rumored but little seen Actual Day With School, but after waiting for Janey's bus for quite a while, her aide (who waits by our house) told us that 100 bus drivers had called in sick and there wasn't going to be any bus.  We thought about driving her, but that would require Tony missing a good deal of work, especially if she also had to be picked up after school (I don't drive in the snow tunnels that are the rule right now in the city---see pictures!)  And I figured a day without many bus drivers was going to be a little chaotic, so I figured I'd keep her home yet again.  I swear, I'm almost starting to see the appeal of homeschooling---at least it's a routine that can be maintained and not one dependent on weather (just kidding a bit, I'm not going to homeschool)

So---we went to the library around noon.  Like so many trips with Janey, what would be a little outing for most people turned into quite a deal with her.  It illustrated so much of what is tough with her and also what is great with her that I thought I'd write about it.

After finding parking (the lot was very full and made smaller by snow mountains) we went in and went to the kids room.  I kind of knew that Janey's picture of the library was not accurate.  I'm pretty sure she saw a video about going to the library, probably complete with giant dinosaurs or animated creatures, where there was lots of singing and fun.  She's been to the library with me lots of times, but just to quickly pick up books that were being saved at the desk for me, and that was usually a different branch.  But I figured we'd see what she thought.

Janey very briefly looked at the picture book section.  I told her she could pick out any books she wanted to take home, but she had no interest in that.  Instead, while I was distracted for about a second, she ran across the room, straight toward a baby in a mother's arms.  When I saw that, I screamed "STOP!"  I didn't use a library voice.  Several calm mothers with perfect looking little toddlers sitting serenely reading books gave me a troubled look, like I was breaking some kind of code.  I felt like saying to them "I was once you.  I used only gentle tones.  I explained everything carefully to my children.  I would have sat down with you and made friends and arranged a playgroup.  However, if you value your baby's safety, you should be very glad I am not like that now, or Janey would have at least tried to grab the baby out of your arms"  Instead I just said "She is autistic and a little unpredictable"  They all smiled an inclusive smile and we went on our way.

The kind librarian asked me if we were looking for anything special, and I said some Mother Goose books.  She showed me the section, and I grabbed a few quickly, while Janey wildly spun a globe that was on the shelf.  Then she went back to the picture book section and I again said she could pick a book.  Evidently that displeased her, as she grabbed my hand to bend back my fingers and then did some fancy trick I am still not sure how she achieved, and twisted my arm around somehow behind my head, and for a minute I thought she was going to break my wrist.  I hissed out "LET GO NOW" and she didn't, but I got out of the grip.  I said for the benefit of the audience "Okay---we tried the library a little bit, but when you get upset, it's time to go!  We'll try again another time!"  The librarian was very sweet and offered Janey a sticker, which she took.  I checked out our books and we blew that joint as quickly as possible.

So...what's the lesson here?  Partly, that I probably should not have attempted the library alone with Janey.  She easily could have hit the baby or seriously hurt me.  But in a way, I'm still glad I did.  I need to get Janey out there, to have her be part of the community as much as I can.  It's very, very, very tough to do, but she did ask to go to the library, and maybe if we do try another time, it will be easier.

The whole deal does illustrate why giving Janey a "normal" life is so hard.  There is so, so little I can do safely with her any more.  It is why inclusion, in so many meanings of the word, is challenged by a child like Janey.  And it's why parents like myself, and there are lots of us, so very much need help.

Mood Stablizer or Mood Shortener?

It's been about a month now that Janey has been taking the mood stablizer medication, and I think I'd have to say it's a tentative thumbs up.  Overall, things have been somewhat easier, although of course it's hard to say what is a result of the medication and what is just part of the ebb and flow of Janey's phases.  But after the second fairly good weekend in a row, and this one even a three day weekend, I feel somewhat encouraged.

I don't know if I'd say that Janey's moods are really stablized, though.  I'd call it more a mood shortener.  When Janey's moods got bad in the past, we'd brace ourselves for at least a few days of stormy weather.  She did not recover well from being upset.  Lately, though, even when Janey gets violently upset, she gets over it fairly quickly, and the rest of the day can often be salvaged.

It's taking us a while to adjust to this new reality.  Yesterday, Janey had a very major outburst when waiting in the car with Daddy for Freddy to be ready to go to the store.  I wasn't there, but Tony said it was complete chaos---screaming, kicking, biting---all that.  We both settled into a resigned, depressed mood, thinking the weekend was essentially over.  I think it took us both a little while to notice the reality---Janey had recovered and was perfectly fine.  She went on to have a pretty good day.

This morning was similar.  Janey got upset that her every breakfast demand was not instantly met.  She slapped me, and then grabbed a huge handful of ice cream out of a half gallon container.  She was about to throw it around when we grabbed her hand.  Needless to say, the ice cream all wound up in the trash, and we were ready, again, for a tough day.  But within half an hour or so, she was happy, cheerful.

School has reported similar situations.  Most days, Janey still will act out at some point---hitting or screaming.  But she recovers.  It seems lately like her underlying mood is good, and the bad moments are the exception.  That is a big, big difference from the past.

For me, the weekend had a few great moments.  One was when I was having a nap yesterday.  Janey started asking for me, and I woke up.  I went out to see her, and she immediately stopped fussing and gave me a huge hug, with a giant smile.  I realized I can barely think of a time that she has done that.  She's done it for DADDY, of course, but for me---no.  She looked so thrilled to see me.  It was wonderful.  The other moment, or moments really, was Janey asking to be read to.  I've always read to her all I can, but it was at best something she tolerated.  Lately, she WANTS to be read to.  If you know me, and my love of books, you know how much that means to me.  It means more than almost anything that could happen.

We are still holding our breath here.  So many changes with Janey don't turn out to last.  And the very tough behaviors are still there, mixed in---just as intense as they were, if shorter.  I am feeling hopeful, though, and a little scared of being hopeful.  2014 was the year of being blindsided---first by the change of schools and then by the hospital month.  I realized I don't like to be blindsided---I don't like it at all.  So I guard myself against it by not getting my hopes up, by anticipating the negative.  But I need to celebrate the good moments, and to recognize progress when it occurs.  So---I am recognizing and celebrating---for now.

Another New Year's Eve, and a look back

I decided to look at my last post of each year since I started this blog, when Janey was 3.  It was an interesting exercise.  A couple things struck me.  One is that I kept, each year, desperately looking for progress, finding signs of it, listing them and then, the next year, without realizing, listing the same things again.  The progress ebbs and flows, but it doesn't seem to really be a forward line.  Another thing is that the end of the year has been a quite tough time a few of the years.

2008 Last Post of the Year Link

In 2007, I'd just started the blog, and didn't really write any year end post.  At that point, this blog was more of a diary. 2008 was a lot the same.  Strangely, what I wrote for the last post there sounds like it could have been written about the past few months---hitting the TV, biting, scratching.  Janey was only 4 then, and so the behavior was easier to handle, but it's a little startling to see it started then, with quite a few years in between that she has less acting out.

2009 Last Post of the Year Link

Janey's love of Christmas music hit that year, and it's fun to read about that.  I was starting to realize how severe Janey's intellectual disability was, and how her talking was very limited.

2010 Last Post of the Year Link

Janey was 6 that year.  It was a tough year, the year she had such a terrible time around June, and we started her on medication.  I reflected about the lack, once again, of a miracle breakthrough, and was starting to see it wasn't ever coming.

2011 Last Post of the Year Link

I was a little more upbeat that year, the year Janey was 7.  I remember that as one of the better years.  I went back to the theme of how limited the progress was, but I also wrote about cute things she was doing.  We were learning to enjoy our little girl as she was, not for what we were hoping she would become.

2012 Last Post of the Year Link

Another fairly good year, when Janey was 8.  I reflected on realizing that I was the one who knew her best, and I was encouraged by her increased understanding of our talking, and her communication, although talking wasn't how most of it was done.  I mentioned toilet training, surely thinking we were finally on our way (we aren't, and I now think we never will be)

2013 Last Post of the Year Link

A very downbeat post.  The end of last year was awful---the whole year was the start of the new reality, that Janey was getting older and things were getting tougher.  She was becoming increasingly unhappy, and I was feeling increasingly pessimistic.

And that brings us to now, 2014.  It's been quite a year, as most of you know.  The two big events were Janey changing schools and her hospitalization.  She switched this year from the inclusion classroom and school she'd been in since 3 to an autism only classroom in an autism wing of another school.  Much of that went fairly well, and in fact the time from about May-October was overall good, with Janey having a pretty nice summer and even going to the amazing Camp Fatima overnight.  However, we will most remember November this year, when Janey's self-injurious and lashing out behaviors increased to the point that she spent 24 days in two hospitals.

Where are we right now?  Right now, today, Janey is in a fairly good mood.  We are thinking her new medications might be doing something, although we've had kind of an off and on pattern of good days and not as good days.  Janey is Janey.  I think less, these days, of progress, and more of just learning how to best be a mother to the Janey I have.  She is an amazing person in so many ways.  We continue to enjoy her love of music.  Just today, we listened as she heard three new songs (we've been listening to a classic rock countdown) and sang them back, all perfectly, within minutes  She and Tony have a special morning routine any day he's not working---bacon and pan-fried vegetables all morning.  She uses the computer with ease to watch videos she likes.  She is getting tall and remaining beautiful.  Yet we are on alert all the time.  We knew at any minute, she might rage and bite us or scratch us.  We know that good days are to be treasured because there will be bad days, and they might be very bad days.  We love our Janey.  We despair over her, often, but we delight in her often too.

Here's a year end picture of my girl, and my year end wish to all of you.  Might you all have a 2015 where the happy moments outnumber the sad, and may you all have moments of true, pure joy in your special children, the moments that keep us all going.  My love to all of you.

Meeting Janey's school team and feeling lucky

I had a meeting today with Janey's teacher, her ABA therapist, the ABA supervisor and the director of Janey's section of the autism program.  The school arranged the meeting just to let me get to know everyone, to put names with faces, and to talk a little about their behavior plan with Janey.

After the meeting, I had a feeling that has almost always been my feeling after any meetings at any school my children have attended---a lucky feeling.  A feeling that I am extremely fortunate in having schools, teachers, therapists, aides and administrators that are dedicated, caring, professional and intelligent people.  I don't take that for granted.  I know that isn't the case with every school or district everywhere.  But it's been my experience over the 17 years I've had dealings with the Boston Public Schools, with very, very few exceptions.

Last year was a tough one.  I didn't want to move Janey from the inclusion school she attended, the same school her brothers had attended.  That school had recently been expanded to include preschool through high school, which in Janey's case would have meant until she was 22.  Just after that, we were faced with the fact that Janey needed something more than her school could give her.  She needed to be in an autism-only classroom, in what the Boston schools call an autism strand, where she could have the supports of not just a teacher but a whole staff devoted to autistic kids.  I resisted the change, but I knew in my heart it was the right thing to do.

Janey's new school is very big.  The autism program is only a part of it, with around 19 autism classrooms.  The K-8 school has around 800 students total.  Her old school was about 220.  That was a huge change.  But I'm gradually feeling a little more at home there.  It will probably never feel quite as much like a home away from home as her old school did, but what is important is how Janey feels, and I think she feels at home there.

I saw Janey for a minute today.  Her class was going to lunch (crazily early, at 10:30!)  She was in line, holding her water bottle and looking like part of the crowd (except for being a girl---there is one other girl in her class, but as will probably always be the case for Janey, the class is mostly boys).  She came over to see me for a minute, and I hugged her and said "You need to go with your class now" and she cheerfully did.  That was the routine.  That was the plan.

We talked a lot about Janey's screaming at the meeting.  I loved it that everyone wanted to deal consistently with it, and that they did understand that it's almost impossible to see what triggers the screaming.  Since no one method seems to work much better than any other, it makes sense for there to be a consistent approach to the behavior.  At school, when she screams, they give it as little attention as possibly directly.  If she is doing a preferred activity, they take away the activity and say "Tell me when you are ready"  If it's not a preferred activity, like desk work, they leave it in front of her.  If she moves to bite her arms, they put her hands down.  When she says she is ready, they go back to what was being done.  I told them about the screaming room (when we take Janey to the bathroom to scream if she isn't able to stop) and they liked that idea and might use that as an alternative for when the screams persist.

The last few days have felt more manageable with Janey.  The bus is getting more consistent and we are falling more into the rhythm of the school year.  I made sure to tell everyone today that they preserve my sanity every day, and I hope every special educator out there knows that although I don't like to throw around the word "hero" until it's meaningless, I'll make an exception here.  You are heroes.