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.

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.

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.

Keeping on blogging, even when it's hard to do

Over the seven years I've had this blog, I've almost never NOT felt like writing for it.  Even on the worst days, writing was something that helped.  This past week, though, is the very first time I've had less than full enthusiasm for writing here.  

I've noticed, in reading other autism blogs, that most of them deal with kids making a lot of progress.  I don't think this always means that every kid with autism DOES make a lot of progress.  I think it means that when the progress stalls, the writing does too.  It's easier to feel excited about writing when there is something new and exciting your child is doing to talk about.  I think this is also one of the reasons that there are less blogs out there featuring kids with low functioning autism (and yes, I do hate the term, but for now, it's the term that will let people understand what I mean).  Another reason of course is that LFA doesn't leave a lot of time or energy for blogging, but it's more.  I think people want to write encouraging and upbeat things.  They want to help others.  They want to give hope to those with newly diagnosed kids.  When that gets hard to do, it's harder to find a way to write that feels useful.

The past year with Janey has been a very discouraging one, overall.  After starting her 3rd grade year with enthusiasm and excitement, after looking forward to her being part of a brand new K-12 pathway at the school I loved, after having high hopes when she showed signs of being able to read---things felt like they came crashing down.  Janey's behavior escalated, and I gradually had to accept that the school she was in was no longer the right place for her.  Sometimes I feel like it's only now it's really hit me.  Although I know I'm being a little dramatic in saying it, it's hit me that she couldn't be included in a school called a total inclusion school.  That was and is tough.  

Janey's behavior has changed in quite a few ways over the past year.  It was about a year ago she first started biting her own arm, a behavior that now shows itself almost every day.  She also started lashing out by pulling people's hair, scratching them and occasionally biting them.  This doesn't happen all the time, but it happens enough to put people around her on edge.  The screaming escalated to a new level.  When Janey screams now, it's absolutely incredibly loud and horrible to hear, because she sounds like she's in extreme pain.

If I'm totally honest with myself, I also have to say Janey talks less than she did a year ago.  Sometimes I make myself go back and read old blog entries, where I often quote things she has said, and she is not currently talking as well as she did at almost any point in her past.  Her speech at this point is either requests or quotes---almost never anything else.  The requests are only in regards to food, videos, sleep or hygiene (wanting a shower or her hair brushed, things like that).  The quotes generally have nothing to do with anything actually going on.

Janey's sleep is also often very disrupted.  It comes and goes, but there are often two or three weeks in a row where she wakes up every night at 2 or 3 am and doesn't go back to sleep.

I have to admit it---I'm depressed and discouraged lately.  It's hard for me to be encouraging in my writing.  It's hard for me to look at the bright side of things.  

However, I'm going to keep writing.  I feel like I have to, for myself, for Janey and for the other children out there with low-functioning autism.  Unlike those with higher functioning autism, children like Janey are not going to write their own blogs (and I know there are rare exceptions, but those are children who HAVE found a way to communicate, which means they CAN speak for themselves, and it is great they can).  I want to be the voice Janey can't be.  I want to be honest about her life, and our life.  I owe that to her.  I want to be a voice for the kids like her---the ones that don't make for conventionally uplifting writing.  I want to do that because despite that, she is a person of value, a person with just as much importance and just the same rights as any other child.  If I don't write the truth about life with her, I am hiding who she really is, and who she is is not something that needs to be hidden.  I love my daughter more than words can ever say, but I'm going to try to keep using words to give her a voice.

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.