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.

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"

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.

Specialer Needs within Special Needs

One thing I really like about Janey being in an autism-only classroom is that lots of information gets sent home about opportunities for kids with special needs.  In an integrated classroom, it would set the special needs kids apart to just give them such information, but in a classroom where everyone has special needs, everyone can be given the flyers.  I love looking them over.  They do sometimes, however, point out to me that "special needs" covers some pretty wide ground.

I got a flyer recently about a camp run by the Boston Centers for Youth and Family---the community centers of Boston.  It was about a winter version of a summer camp they hold, called Camp Joy.  It meets on Saturdays, near us, and it sounded great---things like swimming, games, field trips, etc.  It was very reasonably priced, and I was starting to think about doing the paperwork when I read more closely, and saw that one of the requirements was that "campers must be able to interact in a 4:1 participant to staff ratio".  Well, that took care of that.  There is no way on earth that would work for Janey.  She could, if she was in a very good mood, maybe be okay with a 2:1 ratio, but she often needs 1:1, and during her tougher moments, more like 1:2, with two adults for just her.  

This reminded me of the respite house we tried last summer.  It was also for children with special needs, but we decided to stop sending Janey when it was obvious that the ratios of caregivers to children was not at any kind of level safe for Janey.  It was a beautiful place, run by very well-meaning workers, constructed I imagine at great cost by donations, but it left out kids like Janey.

  

I am not sure of my feelings about special needs programs that can't handle the "specialer" special needs.  I like to keep rooted in reality.  I know that every program doesn't have the staffing or means to serve all children.  I know that if they put their funds into being able to serve Janey, that might leave several other children with less demanding special needs without a program.  I don't expect special treatment.  But sometimes it's very frustrating that Janey's needs leave so very few of the opportunities for even children with special needs open to her.  

What would be a solution?  One I thought of was recruiting college students as volunteers.  There are many colleges in the Boston area, and many students preparing for a career in special needs teaching.  Maybe they could get class credit for providing one-on-one help so that high needs children could attend something like the Camp Joy winter camp.  I'm not expecting them to help Janey go to even a regular camp, or something like a regular dance class.  I would love help just so she could go to a special needs camp.  I am sure there are a lot of other mothers and fathers like us, that would love that help.

One of the problems is just with the term "special needs".  It's pretty general.  I have been trying lately to avoid terms like "low-functioning autism".  I can understand that it labels Janey and kids like her, that every child has areas where they are low or high functioning.  But if you just say "special needs", you aren't saying a lot.  And the general public might think, and in fact I've often heard it said "There's ALL KINDS of programs out there for kids with special needs!"  Well, that is even debatable, but there are some, but except for the public schools, most of them can't serve a child like Janey, a child that needs absolutely constant supervision and is prone to sudden accelerations in difficult behaviors, a child that is not toilet trained and can only speak in a limited way.  What do we call kids like her?  SPECIAL special needs?  And how few people out there are aware of the challenges of raising a child is not even able to attend a camp or program labeled for being for children with disabilities or special needs?

I'll end with a thank you to the public schools.  I say it a lot, because I think it a lot.  I am so thankful that the public schools serve everyone.  I send Janey off to school just like any other parent.  She might not learn the same things, but she gets on the bus and goes to school.  I know that wasn't always the case, even in fairly recent history, and I am so glad that I am living at a time when it is.

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.

Inclusion vs. separate classrooms---some musing and some ranting

Here's an article I just read about autism and the debate over inclusion vs. substantially separate classroomes...  here----.  The article doesn't come to much of a conclusion, but it prompted me to write about some of my own thoughts on the subject, and to rant a bit over something that angered me!

As you probably know, recently Janey left the full inclusion school she had been a student at since the age of 3, and she now is in a program and classroom for autistic children.  Overall, the transition itself went well   Everyone involved did their best to make it as smooth as possible, and Janey seems to be doing well, or at least as well as before, in the new classroom.  It's too early by far to draw any conclusions about which method of education is better for her.  Deciding that will take at least a year, I think.  But I have a lot of positive feelings about her program now.  I like it that she is being taught life skills, that she has music and art and swimming and gym every week---areas where she can shine in a lot of ways.  I like the structured teaching, and most all reports I get are that Janey is doing pretty well. I hear many wonderful things about her teacher and aides. It's not perfect --she still has meltdowns and tantrums, and at home, we are seeing some tough behaviors, as I wrote about yesterday.  But so far, looking at strictly how she is doing and being treated, I'm cautiously optimistic.

Now the anger.  I didn't let myself write about this last Friday, because I was too mad.  I took some time to calm down, but I am still upset.  I knew going into the new school that the very long school day (right now, Janey is gone from the house from 7-5) was just for this year, that the school had a grant to allow them to offer an extended day for this year only.  I was told there would be after-school offered next year I could sign Janey up for.  Janey went to after-school every day at her old inclusion school, a program I loved.  On Friday, I got the official letter (a form letter) saying that the long day was ending and giving the details of the after-school.

The after-school sounded good.  It included things like computers, swimming, yoga, sports and drumming.  I saw as I first read that it cost $30 a week, which sounded reasonable.  But more careful reading led to this line "We have social inclusion activities available for ASD (autism spectrum disorder) students who are ready and confirmed by ASD Strand Coordinators"  Translation---this afterschool program is open to kids who are "ready for inclusion"  Well, obviously Janey is not ready for inclusion.  If she was, I would have left her at the wonderful school she used to be at.  So she can't go to afterschool?  Not so fast!  There is indeed a separate program for the autism class, focusing on "social skills, life skills and homework" and it's available for "only $150.00 a week"

So---afterschool for regular kids and for those deemed to "inclusion-ready" (a term that makes me sick) costs $30.  Afterschool for autistic kids, AT THE SAME SCHOOL, costs $150.

I'll jump in with what I know might be the response here.  I know autistic kids would require a higher level of staffing.  I know that would cost more.  I understand that.  However, more than FOUR TIMES the cost?  For a program that is about 13 hours a week?  A program that isn't even the same as what is offered the other kids?  Really?

Is this legal?  I am not sure.  Probably.  Is it right?  No.  Kids with autism need MORE help, more school time, more teaching.  Families with autistic kids, let's be frank, need MORE respite.  And although I don't have figures to back this, I am quite sure most families with an autistic child have LESS money than other families.   The needs of autistic children limit a family's ability to make money.

One of the thoughts I used to try to calm myself down about this was that I am not sure I would have sent Janey to the afterschool anyway.  There is no transportation for it, and I've quickly gotten used  to the bus. Even $30 a week would have been a stretch some weeks.  However, in a lot of ways, that isn't even the point.  Janey isn't the only child affected here.  And the issue is fairness, not my personal convenience.

I'm sure everyone involved with this is doing the best they can.  They aren't using autistic kids to make money.  But what kid of a society doesn't have funds available to prevent this?  Where does all the money raised for autism go?  Isn't this exactly the kind of case where one of the many autism foundations out there could help?

And I keep thinking---this would not have happened at Janey's old school, the Henderson Inclusion school.  It would have been beyond comprehension there to change more for kids with disabilities.  If I wanted Janey to go to any program at that school, she was able to---no questions asked.  Ever.  And that is the spirit of inclusion.  That is what I miss---the belief that Janey deserved to be fully included.  But as I told this to a friend, she said---"Yeah.  Until they couldn't do it any more"  I jumped to their defense, but she does kind of have a point.  Inclusion doesn't always work.  I wish it did.  But until it does, can we at least never send home letters that make it quite as clear as the one I got how very separate Janey and the other autistic kids are?

Some late breaking news from later this same day...

-Janey came home today with a new flyer from the principal saying that "several documents were sent out that incorrectly communicated our school's design and cost structure for next year", and saying they would share updated and corrected information about next year's after school program in the next few days, and saying that in the meantime, they wanted to be clear that the program would be equally accessible to all students and families with the same pricing structures for each. Hurrah! I think I was not the only one upset over this!

Group hug end to a great week

Janey's new school has a half day on Fridays.  For now, I am going to take her to her old school for the second half of that day.  She got home on the bus about 12:45, and off we went.  I must say---one thing I don't miss AT ALL is the drive!  I got very used to it over the years, but it only took a week of the bus for me to get NOT used to it!  But it was always worth it to arrive at our destination, and Friday was no exception.  Janey did look confused at first when she saw where we were---like she was thinking "Hey!  I am going to the new school now!  Why are we here at the old school?" but it only took her a minute to get very happy she was there.  We went down to her old classroom, where her classmates were waiting to see her.

And then---a movie moment.  One of those moments that you can't script, one that will stay in my mind forever and ever.  Almost every kid in Janey's old class got up from their seats and ran over and hugged Janey.  It was a huge, amazing group hug.  Many kids were saying "Janey!  We miss you!"  Janey had a second of looking overwhelmed, and then she smiled---a calm, happy smile, like she was just getting her due!  Wow.  That was wonderful.

Michelle, Janey's ABA therapist who works with her in her new school and also did at her old school (and still works with other kids there) told me the kids ask about Janey every day and want to see pictures and hear about what she is doing.  That's great to hear.  It was also great to hear all she had to tell me about the new school---stories like how Janey noticed the para in the room had a pickle in her lunch, and started asking every day for a pickle, so now the para brings her one too, how wonderful the gym teachers are and how much Janey loves gym, how they work on life skills like brushing hair and teeth (several days I noticed Janey came home with her hair more skillfully done that I did it in the morning), how another girl in the class sometimes looks to Janey to see what she is doing, and then does what she does (it was great thinking of Janey maybe being a bit of a leader like that!)---so many good stories.  And Janey, the little sneak, is evidently using the POTTY at school---something she won't do at home and wouldn't do at her old school.  I don't think she realizes we all communicate!

Last week was really a terrific week.  Janey went happily on the bus like a pro, I got almost all good reports, we had the triumphant return with the hug---it was terrific.  This weekend is seeing a return to some cranky behaviors, and some poor sleeping, which I hope is just the weekend change of routine and not the start of a tougher spell, but we'll always have last week!

Thanks to all of you for your support, here and on my Facebook page.  In my extreme nervousness about how all this would go, it was a lifesaver to have a place to post updates and share my happiness and concerns.  It amazes me every day that there are people out there all over the country and world that care about Janey and our family.  Please know how much it means to me.

Holding Our Breath, Knocking On Wood

I've been waiting a few days to post an update on how it's going with Janey's move to the new school.  I have a huge fear of jinxes---I'm a Red Sox fan, and I grew up with parents who believed very strongly that if you spoke about good fortune, it was absolutely necessary to knock on wood.  So I am knocking on wood non-stop while writing this.

How is it going?  It's going, so far, amazingly, astonishingly well!  It's a smoother transition than I think anyone could have dreamed of.  I am getting great reports from Janey's new school from her ABA therapist, who also worked with her at her old school.  I haven't gotten any desperate calls about her behavior.  She comes home tired and a little weepy, but that's after a 10 hour day!  She is sleeping quite well, and she is taking the bus like she's taken it her whole life.

The bus alone is something that has given me respite beyond what I ever dreamed.  For 14 years, I drove one child or two every day to the Henderson School.  It was basically a 20-40 minute drive each way, through city streets.  The drive got to be automatic, and I didn't feel like I really minded it at all.  I listened to music and talked with the boys or tried to talk to Janey.  But it took up a big chuck of day, and any Boston driving is stressful.  Now, before 7 am, I go out my own front door and stand there, and a bus comes to get Janey.  She hops on willingly, and I don't see her again until about 5 pm, when the bus brings her home.  It feels like cheating---it feels unbelievably easy.

The morning, I had one of those moments where I was suddenly taken back through the years to my own childhood.  As we walked to wait for the bus, the way the air felt or the light looked took me to a moment when I was probably Janey's age, waiting for the school bus in front of my own home.  There are not a lot of moments of Janey's life that feel like they are similar to my childhood.  I grew up in rural Maine, the older of two girls, Janey is growing up in urban Boston, the much younger sister with two older brothers.  She is autistic, I wasn't.  I lived in a world of books and friends and the ocean, she lives with videos and parents and the small urban backyard.  But at that moment, I had a strange feeling that the moment was exactly mirroring one I'd lived before---a deja vu moment via her.  It gave me a feeling of connection to her that was very special.

So---we are holding our breath.  I think some people might wonder why we aren't more relieved, more relaxed and happy that things are going so well.  We ARE happy, but we also know that with Janey, things can and often do change on a dime.  She is cyclical, and we made the change during a very good point in the cycle.  Of course I always hope the cycle will stop moving---that this will be how it is forever.  But I know that's probably not the case.  When the tough times come again, how will it go then?  Will Janey scream and refuse to get on the bus?  Will she cry all day at school, and bite and scratch herself?  Will she stay awake all night and be manic with laughter all day?  I hope not.  I very much hope not.  And if she does, I hope that being in a program completely designed for autistic kids will help.  She couldn't possibly have been loved more at her old school, but maybe she needed more than love---maybe she needed a program designed especially in every way for children with autism.  We will see.

So, for now, so far, so good.  A huge thank you to everyone who has made this past week better than we ever imagined it to be.

Starting the New School

Today was the day.  After months of decisions, meetings, plans, emotions...today was the day Janey started at her new school, the Lee Elementary School, in an all-autism classroom.  Those of you who have been reading my blog a while know what a very, very tough decision this was for us.  But after talking to and thinking with many people who care about Janey, we decided it was the right decision for now.  Janey deserves the chance to see how she can do when in an atmosphere specifically for kids like her.  Leaving the Henderson school, for now, is one of the hardest things I've ever had to do in my life.  But we are hopeful it's not for good, and today, I am feeling hopeful about the Lee School.

The above picture shows Janey getting on a school bus for the first time ever (except field trips).  She got on like she'd done it all her life!  We were terrified, but not her!  The bus comes VERY early (6:51am) and so we had to wake her up and get her ready MUCH earlier than she is used to (her old school is what they call here in Boston a late school---it starts at 9:15, but the Lee School is an early school, starting at 7:20)  She work up a bit reluctantly, but went out to wait for the bus willingly, and when it showed up, she hopped right on!  The bus was fairly full (not always the case here in Boston) and there was an aide to help her get settled.

Tony and I then followed the bus to her school.  We parked and walked over to where the buses were, and were there when she got off the bus.  She looked a little stunned just then, but immediately many teachers and other adults were around to help her and us.  Her teacher was out waiting for the bus, so we got to meet her right away.  She seemed great!  She offered to have us come up to the classroom with Janey and her, which we did.

Janey's only moment of upset while we were there was when we went up stairs to get to her room.  The Henderson is one floor, and I think stairs to school seemed odd to her.  But after a moment, she readily went up, and into her room.  The room was lovely---nicer than the other rooms I'd seen at that school---tidy and open and inviting.  There are 9 kids in the class, 3 of which (including Janey) are girls---unusual in an autism classroom!  A few of the boys were already there, and one cute guy said "Hey!  I know her!  I know her from the bus!" as if they were long time friends and not kids who had shared a bus a few minutes before for the first time!  We loved that.  Janey looked very happy in the room.  She noticed immediately that the teacher was pregnant (which I hadn't noticed) and went over to have a look at her belly, something she loves to do!  After just a minute or two in the room, the ABA specialist that works with Janey, Michelle, came in to be with Janey also, something that meant a great deal to me---a familiar face for Janey and for us.  Tony and I left after only 5 minutes or so, feeling confident Janey was in good hands.

So, so far so good.  I think things went as well as they did in large part because Janey's old school worked so hard to prepare her (and us).  Nobody made us feel in the slightest like we were being forced out, or not given a choice, and everyone, especially Janey's fantastic teacher Amy and the amazing principal Ms. Lampron, made sure we realized that Janey is welcome back at any time at all.  In fact, because the Lee School has a half day on Fridays, and Friday is a huge day for Freddy at school (he is participating in a major speech contest and wants us there), Janey will go back to the Henderson for the whole day Friday!  That means a lot to everyone, I think.  It made yesterday not a goodbye day but just a "see you in a few days" day.  I am as always so grateful and amazed by the love and caring that nearly every person we've ever had dealings with in the Boston public schools has shown us.

And so we start a new chapter with Janey.  I am feeling more hopeful than I had thought I'd feel.  I think the next few years might be full of a lot of surprises from her.  It's going to be a huge change, and I am well aware of Janey's tendency to have a honeymoon period at the start of new things.  I am sure there will be tough days ahead, but today was far better than I had thought it would be, and I thank everyone that has helped us get to this point.

In Dreams

I rarely dream about Janey, or any of my kids, or even my husband.  For whatever reason, my dreams are stuck in high school or college, or in an alternative world where I don't have a family.  But last night, I had a dream about Janey, one of the very, very few dreams I've had where she was "normal".  The dream was also set in the right now, another rarity.  She was talking to me like any other 9 year old would, telling me about her day of school, asking for various toys, laughing and joking with Freddy.  I was watching her in amazement, debating if I should call a new IEP meeting to tell everyone that she was "cured", that she can stay at her current school.  But even in the world of dream logic, I had my doubts.  I thought "Well, this is today, but tomorrow, she could regress back to how she was.  Probably better to just leave things as they are, and see what happens."

I know why I had the dream, of course.  Janey had about a 2 week good mood stretch, where she was happy most of the time, talking a little more (but nothing like the dream), not crying or screaming much.  It seems to be ending---she screamed a lot last night.  And I got the IEP to sign yesterday.  I am going to read it over carefully, of course, but the handwriting is on the wall.  She is changing placements, to a "substantially separate classroom"  And I am probably 95% sure that is the right decision.  But still, every day when I drop her off at school, I feel like crying, and sometimes do.  I tell myself that part of that is just that I don't like changes.  But it's not just that.  I love her school.  I love the people, the layout, the philosophy. There is a small part of me that feels bitter, although that is a useless and probably misplaced emotion.  But I still feel it a bit, if I am honest with myself, thinking "It's an INCLUSION school!  Whey can't they find a way to include Janey?" I know that they tried, very, very hard.  I know that Janey deserves a chance to prove what she can do in a classroom aimed at helping children just like herself.  I know all that.  But in my dream, I guess I was looking for the loophole.

We live in reality.  Maybe that's why even in dreams, I don't often let myself alter the here and now.  It's too hard to wake up from.  But also, it's not useful.  Janey is who she is.  I love her as she is.  That other Janey, that Janey in the dream, is not my Janey.  That Janey is not hiding someplace inside my Janey.  She is a dream character, and like the other dreams I had last night (just how do I think of these things---having to take a walking detour through a mall on my way home in a car, and that was bad because I was hurrying home as I'd promised a friend's husband I'd act as a shrill for his maple syrup booth at a a fair), it is just the mind for its own reasons making stories up in the night.  I kind of wish my mind would just stick to reliving endlessly the dramas of high school and college that seemed so important then.

The Big IEP Meeting

I should write about today's IEP meeting while it's fresh in my mind, as it was an important meeting, one that will affect the course of Janey's life and ours for years to come.

There really weren't any big surprises at the meeting.  First we heard from everyone who works with Janey about how she is doing---the regular ed. teacher in her room, the special ed. teacher also in her room, the speech, OT, PT and music therapists, and the ABA instructor and her supervisor.  It's always amazing to me to see what a big and caring and wonderful team Janey has---all thoughtfully relating Janey's progress and non-progress.  Basically, she is making progress, and doing things that she couldn't do in the past---matching objects, sorting objects, taking turns at times, using PECS communication more and more and writing her name with ease (which she will never do at home!)  However, everyone agreed that her moods and her difficult behaviors very much impede her progress.  She often will do something one day, but then refuse to do it again.  On bad days, when she is biting herself and lashing out at others and screaming, it's very hard for her to learn at all.

So, at about the middle of the meeting, there was a big pause, as everyone in the room I think knew what was then going to be said---that Janey needs a new type of classroom.  She needs to be in what is called a substantially separate classroom, and because her current school is an inclusion school, she needs to move.  She will move to a school with a large autism program, a program that has existed for a long time---at least 18 years that I know of, which is an eternity in the world of autism.  It's the school I visited, and I was determined at that time not to want Janey to be in.  I've come around since then, and I do feel it's the right decision to move Janey.  We owe it to her to give her a shot at learning more, and being in an environment made for children with autism.  I was impressed with the ratio of children to adults there, with the kindness and patience of the teachers and therapists and aides, with the progress the kids appeared to be making.  I am hopeful Janey will do well at the school, and once the IEP is signed, we will start transitioning her there.

All that being said, there was a lot of crying at the meeting---not just mine.  The principal sat in on part of the meeting, and tears were in her eyes a lot of the time, as well as in almost everyone else's.  As the principal said, the Henderson School is Janey's home.  It has been for years and years.  She first set foot there when she was 2 weeks old (or earlier, if you count my pregnancy).  I have had a child there for 14 years now.  I love the school.  I truly, truly love it.  But what I love, and what I am comfortable with, is not what is most important.  Janey's needs are.

We will stay in touch with the Henderson.  Janey may still go to after-school there.  We will take her to the spring dance.  We will visit.  And some day, we will bring her back.  The Henderson now is going to be a K-12 school, and at some point, when Janey is ready, it will be her school again.  That is my hope, anyway, and the hope of the staff there.

So, for now, I am going to just try to enjoy these next weeks.  I'm trying hard to stay positive, because I know there is a lot to be positive about.  It's a positive thing to have a whole room full of people working to help Janey, to have a school full of people that love her, and a new school to go to that I do hope will love her too.  We are all hopeful that Janey will be able to progress well at her new school.  But, I do admit, the tears keep sneaking out here and there.  I guess any big change feels scary, and one involving a child like Janey, doubly so.  But we are not going through this alone---we are very lucky to have many others helping us, and I thank all of them for their past, current and future love of my precious girl.