When Janey was diagnosed

When reading accounts of parenting children with autism, the moment that the family receives the autism diagnosis is almost always written about in detail.  I was reading a few such accounts lately, and it struck me that, although Janey being diagnosed was certainly a fairly major point in the timeline of our lives, I don't remember it as being quite as stark a blow, as frozen in time a moment as often seems to be the case.  I didn't remember the date until going back to the first entry of this blog---it was Saturday, December 8th, 2007.  Janey was three years and almost four months old.

I started thinking tonight about that time, and it became clear to me quickly why it seems a bit of a blur in memory.  It was a horrible time, in many ways---I can say Janey's diagnosis was one of the least troubling parts of the months around that time.  The month before, in November, I had been put on a jury of a murder trial, an incredibly sad murder of a four year old boy.  It lasted three weeks, putting a huge strain on everyone emotionally and logistically.  Janey had started 3 year old preschool in September, half a day, at the school the boys had both gone to, as a regular, non-special-ed student.  So someone had to get her in the middle of the day at school.  Tony missed a lot of work.

While I was on the jury, in the middle of the testimony phase, my sister's fiancee died suddenly.  He had been recovering from heart surgery related to Marfan's Syndrome, and it looked like all was going to be okay.  Getting the call that he had died---I can't even think about it, ever, without crying. The sadness I felt for my sister, and the incredible frustration that I couldn't even go to the funeral, couldn't be there for her as I wished I could without disrupting a huge trial----it is with me still.

Other factions were stressing us strongly during this time.  A very close friend from childhood was going through a family crisis that I won't get into except to say it was the worst family crisis you can possibly imagine outside of a death.  The boys were in 5th and 7th grade, both having a somewhat tough year.  Tony's office was on the verge of closing, and he was looking for a new job within his organization.  And in the background, always, there was the creeping realization that something was happening with Janey, something terrifying.

Janey, about a year after diagnosis

I wish I could remember more about the year Janey was two.  If I had known it was the last year she would talk easily, the last year I'd have a conversation with her, the last year she'd seem truly happy---well, I can't write much about that.  I just wish I'd recorded every minute of that year.  Then again, maybe it's good I didn't.  I have never been able to watch the few videos we do have.

The August before Janey started preschool, we took our three week cross country driving trip.  I've written about that before.  I had started noticing some signs of withdrawal, of odd behaviors, in Janey that June, but it was during the trip she seemed to slip further away.  The day she started school, I asked the special ed teacher in the room (her school was an inclusion school, with a regular and a special ed teacher in each room) to let me know if he had concerns about her.  It was, of course, during the middle of the trial, on an afternoon we had off, so I was able to get her at school, that he told me he did have concerns---quite major concerns.

And so---we got on the fast track to have her seen at a clinic.  She was evaluated (after I filled out realms of paper and did lots of phone interviews) by a developmental psychiatrist and a developmental pediatrician.  And that was the day, that Saturday, that they told us she was autistic.  We got a formal report later on, but by that point, they didn't need a lot of time to see what was pretty obvious, so they told us the same day they saw her.

I don't remember the rest of that day.  I don't remember crying, although I'm sure I did.  I don't remember what we did after the visit.  I don't remember much.  Maybe that is why I started the blog, three days later, to start recording what was happening, to not let it slip away like the first three years of her life seem to have in my mind.

In some ways, maybe it was good that her diagnosis came in the middle of such a stressful time.  Maybe it let us not focus on it.  But I think it also didn't let it quite sink in.  For a variety of reasons, I don't think I truly believed it.  I think I thought we'd have some tough years, sure, but I think there was a part of me that felt it all was a mistake, that I'd play along but not really buy into it all.  Maybe that was my way of coping.

I'm going to write soon about what I wish those early days after her diagnosis had been like, and what I'd do if I knew someone going through early days like that.  But for now I will stop, because I want to come back to the here and now.  I'm glad many years have passed from that time, and our lives are calmer.  I'm glad I will never have to relive 2007.  I'm glad to be here, in 2017, living today's life.  Very glad.

"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.

How Little Closed Doors Add Up

A while ago, I read this article about an IKEA playground---how a mother wasn't allowed to go in to the playground with her autistic 9 year old, so he wasn't able to play there.  My reaction at first was "Well, that's not much of a big deal.  That's their rules"  Then I got thinking about it, more and more, over the last few weeks.  Although that particular incident might not be a big deal, little closed doors like that one add up.  They add up into a world where so many, many places are closed to Janey and others like her.

Most of these closed doors are not formally forbidden to Janey, of course.  They are public places that legally, she's free to go.  However, because of her behavior and because I don't want to intrude on other people and their rights to use public places, I just can't take Janey to them.  For example, after our trip to the library, I realized that it was not a place for Janey, especially not with small children around.  Trips to playgrounds or to splash parks are not really possible, because Janey is bigger than most of the kids there and prone to lashing out at the little ones.  Restaurants are out of the question, for the most part.  I would not ever attempt a plane, or a longer train or bus ride, because Janey would scream at many points during the ride.  Church doesn't work---others can't quietly worship with a screamer in their midst, and Sunday schools or childcare aren't staffed by those able to handle Janey.  We can't go to movies or plays or concerts, because others pay to be there and it's not fair if they can't hear what they paid to hear.  If you start to think about this list, there are very few places we can take Janey.

I don't like the above list, but I can understand it.  I think sometimes of the Spock line from one of the movies "The needs of the many outweigh the needs of the few" (rest in peace, Leonard Nimoy!)  Although I COULD make a point of taking Janey to many of those places, and I know many children with autism could handle those places without making them hard for others to use, I know Janey, and I am not going to ruin a movie or a restaurant dinner or church for others to make a point.

What I don't understand, what I have a much harder time accepting, are the closed doors in places that are supposed to be for children with special needs.  I think often, more than is probably reasonable to think about, about the Saturday program run by the city that I got a flyer about from Janey's school, for special needs children.  The program had a 1 to 4 ratio of caregivers to children.  That made it, in essence, closed to Janey.  She needs a 1 on 1 ratio.  The program sounded so ideal, but, much like the other respite program we tried, it seems aimed at children with mild special needs, or perhaps children with special needs that are physical and not behavioral/emotional/intellectual.

A literal closed door that comes to mind for me so often is that of the Child Life room at Children's Hospital.  When Janey spent six days at Children's awaiting placement in a psychiatric hospital, we were not allowed to take her out of her room.  Right down the hall, there was a room chock filled with toys, books, games and the like.  We were not allowed in that room.  It was for the SICK children, the PHYSICALLY sick children, not the children like Janey.  I even offered to take her there in the middle of the night, when other children would not be there.  I would never, ever have gone there and put a little sick toddler in jeopardy.  I only wanted Janey to be able to play there if no-one else was there.  But that was not permitted.

Janey's old school, the inclusion school, was in so many ways a dream school.  It had a wonderful courtyard, an outdoor classroom, a beautiful sensory room.  It was filled with people that had known Janey since she was born.  I loved her school.  And then---it too was closed to her.  I understand the reasons---I understand the reasons for everything I've written about here.  But still---sometimes it makes me cry to think of all the places Janey is not able to go, all the doors that are closed to her.

What can be done?  I'm dreaming here.  In many ways, maybe nothing can be done.  Maybe my initial reaction to the IKEA story was the true one---well, that's just the way it is.  However, I will dream.  I dream of restaurants, parks, museums, churches, playgrounds, all of those, having special days for autistic kids and families.  If we had the urge to eat out, or go to church, or a park, we could look at a web page and find a place that had a special day going on.  Even if each venue only held such a day once a year, there's enough of those places that we'd almost always have a place to go.  My other dream is that programs for special needs could truly mean ALL special needs---that I could describe what Janey needs and it would be provided.  And a big dream---that someplace like Children's Hospital would treat mental illness like physical illness---that they would actually find a way to make children like Janey feel welcome, and not like a scary outsider.

Life isn't fair.  That old chestnut mothers tell their children is very true.  Everyone has closed doors, and I accept that.  But the amount of doors closed to Janey, and to children like her, create an isolation that builds on itself, that creates a loop, a vicious circle.  There are no easy answers to this problem.

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.

School Starts, My Anxiety Rises

Janey started school yesterday.  Although her classrooms are sort of ungraded, she is starting 4th grade.

As always, although I'd been feeling a bit eager for school to start, the first day seemed to come suddenly.  However, we got out to wait for the bus on time.  It was supposed to pick up Janey at 6:29 am.  At 8:30, we finally gave up and drove her to school.  No bus showed up.  Not at all.  Now, if you have a child with autism, or, as a matter of fact, if you have any child at all, you can imagine that waiting outside your house for 2 hours for a bus that never shows up is not easy.  And of course, you can't go back in the house, because the minute you do that, the bus will show up.  Or you will think it might have.  It was a long 2 hours. The picture show the start of it, as Freddy was leaving for his first day of his senior year (he takes the commuter rail to school)

When we got to the school, we were told there were all kinds of bus problems, and that "you need to call the hotline".  Well, I had.  I'd called the transportation hotline twice at that point, each time was on hold for over half an hour and then was cut off.  I called twice more during the day, figuring that around noon there would be less volume.  One of the times, I stayed on hold for 45 minutes.  I never got through once.  When we were at the school, one of the school employees said something that is one of my least favorite things to hear "The only way to get this fixed is for you to stay on it as a parent".  NO.  I looked up and saw the staff directory for transportation for the Boston Public Schools runs twenty people.  That isn't the bus drivers or aides, that is the transportation ADMINISTRATION.  It is THEIR job to make sure kids are picked up by buses.  It is THEIR job to provide a hotline that actually works.  I am sure most of those 20 people make more than my husband does.  I emailed 3 of them yesterday, letting them know the bus never came.  No answer.  No surprise there.

I am ranting a bit here.  But it's this kind of thing that I find lacking in the schools.  There are wonderful teachers, principals, staff---I've barely ever met anyone that I would not trust my child to happily.  But it's a broken system in so many ways, and that affects the education.  For example, for summer school, the bus almost never actually reached our house before school was supposed to START.  It had more places to go before it got to the school, which is a 20 minute drive from our house even if you go straight there.  So the 5 hours of summer school was never 5 hours.  Janey's school this year runs from 7:30 to 1:30.  The bus showed up today at 7, with lots of other kids still to pick up.  They aren't going to get to the school. by 7:30.  And school seems to actually end at 1, not 1:30, to start getting kids on the buses, which is a huge job, I am sure.  So every day, there is teaching time lost, lots of teaching time.

These issues affect all kids, not just kids with autism, but like so many issues, autism makes it tougher to deal with them.  Janey needs consistency.  I considered just keeping her home yesterday, because if we drive her one day, she wants to be driven every day.  She needs the routine of the morning, not to get them when it's over.  She needs every hour of instruction she can get.

I realized yesterday part of what was upsetting me was that it was my first day in many years not taking a child to the Henderson School, Janey's old school.  I know she is doing well at her new school, and that there are great teachers and therapists there.  But I've never met her teacher in person.  She has a new ABA specialist this year, who I have also never met.  I don't feel like part of her new school.  I didn't know a soul in the office yesterday.  I felt the sting of having to change schools all over again.  I wanted the day to be like other first days, a happy reunion of friends I've known for years, with so many people greeting Janey and being excited to see her.  I have to remember that is MY issue, not Janey's.  I think she's happy where she is.

Rant over.  I feel better having written about it.  I hope everyone who reads this is having a great start to the new school year.  Sit back and have an extra coffee.  That is what I am about to do.

New school show and my self-pity moment

Today was a year-end show at Janey's new school.  I've been to many, many shows at her old school, but this was the first one at her new school.  I was nervous, which is crazy, as not a lot is demanded of a parent at a school show but to sit there and clap.  Still, I was.  I wasn't sure exactly where in the building the show was (it's a BIG school), I kept worrying I had the date or time wrong and I kept thinking how I didn't know anyone there.  However, I knew those were fairly silly things to think about, and of course I made myself go, and I found the auditorium just fine, and got there at the right time and date, and sat down to watch.

The show was like most elementary school shows---lots of cute kids dancing and singing along to catchy songs.  Janey's old school was exceptional for shows---amazing, really, but I know that isn't the norm.  This show was sweet, and that wasn't why I spent half of it trying not to cry.

The reason for the crying?  I think it was when it really hit me.  Janey doesn't go to the Henderson School any more. She really doesn't.  And that made me sad.  And that was self-pity.  I was feeling self-pity because I liked going to the old school, seeing old friends, knowing most everyone, feeling like a part of it.  For someone like me, with what I'd have to admit is a dose of social anxiety at times, leaving a place I've come to feel at home at is not at all easy.

But for Janey?  The new school is great.  I was able to watch her teachers interact with her, and saw how much loving and caring attention she got.  I saw how adorably they dressed her up for the princess song she was in.  I talked to her teacher after the show, and she was wonderful.  Janey got upset near the end of the show, and her ABA therapist, another wonderful person, took her out. Janey looks happy at the school.  She is doing well.  She is still among the lower-functioning kids, even in a class with all autistic kids.  I could see that she needed much more supervision than the other children, and that on stage, she had someone right next to her, which was not the case with the other kids.  In many ways, it's like at her old school in terms of the level of support she needs, and I guess that shouldn't surprise me.  But now she is in an environment designed for kids with autism, and that is good.

On the way out, I saw Janey's old ABA therapist, Ken.  It was so great to see him, and to hear him say how very much he thinks we made the right decision about schools.  He knows both schools, and he said there is no doubt in his mind that Janey is in the right place.  That meant the world to me.  I know he would be honest to me if he didn't think so.  Seeing him also made me realize that I DO know a few people at the new school, and I will know more as times goes by.

I've been so lucky with Janey to have had so many people work with her that love her, that take good care of her, that understand her.  Seeing her today, even during my self-pity moments, sitting with her new teacher, smiling and happy and cared for, was a very good feeling.  I'll close with a picture of her in her adorable costume!

Four mini-posts in one

Sometimes I have something I want to write about Janey that is too long for the Facebook page but too short for a blog post.  So here's four of the those middle-sized stories....

1.  In the car today, out of the blue, Janey said "J-A-C-K...that spells Jack!"  I was quite surprised.  I do know where she learned it.  A few days ago, I watched a video about Soma Mukhopadhyay and her rapid prompting method of teaching children with autism.  I don't know enough about it yet to really talk about it, but I was intrigued with the idea of teaching Janey how to spell words.  I started spelling random words I was saying to her.  She was singing "Hit the Road, Jack" the other day, and I spelled out Jack.  I've spelled out about 100 words since then, and she showed no signs of even listening, but obviously, she was, and it's something I'm going to keep doing, because, well, why not?

2.  Tonight, Janey started humming the theme to "Star Wars", perfectly, of course.  I had no idea where she learned that one.  She's never seen Star Wars.  I wasn't even sure, but I checked my 2,000 at least long song list of songs I play randomly in the car, from my iPod, and it was on there, and showed it had been played once.  I think that was at least 2 years ago.  I've said Janey knows by heart every song she's ever heard, but I always wonder if I am exaggerating.  I don't think I am, and this helped convince me.

3.  Among some great moments like the ones above, there have been some very tough ones lately.  Janey's screaming has been truly epic over the last week.  It's not all the time, it's probably overall shorter in duration than it used to be, but it's certainly more intense.  A few nights ago, I was trying to talk to my sister on the phone when Janey woke up and started screaming.  I tried hard to keep talking.  I hadn't talked to my sister in a long time, and I very much felt the need for a conversation.  But Janey got louder and louder and more intense and more intense, until I finally hung up.  I lay down next to her to try to calm her, but by that time she was in such a state that she lashed out at me, in a scary kind of way.  I walked away and cried, as she kept screaming.  She screamed about five more minutes, and then went back to sleep.  I didn't sleep, for quite a while.

4.  I took Janey to her "old" school after her half-Friday at her new school this week and last week.  Each time, as they did the first time, almost her whole class comes over and gives her a huge group hug.  This time, Janey was waiting for it, and had a very, very satisfied and content smile on her face as they hugged her.  She isn't at all overwhelmed by all the fuss.  I think she sees it as her due.  It's wonderful to see.  There are only a few more Fridays left in the school year, and next year, her schedule will not include a half Friday.  I think that is when it will really feel like she is no longer at all a student at the Henderson School---for now!  She will return for high school at least, to their brand new Upper School.  I tell myself that, because it keeps me going, and I do think it will happen.

So there's a few stories.  As always with Janey, there are amazing moments and amazingly tough moments, mixed together.  Tony and I have said often, half as a joke and half not, that we wish that out of three kids, we had gotten one boring one, but that is not what fate had in mind for us.  We live in interesting times, always.

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.

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.

When inclusion is no longer working

This is probably the hardest post I've ever had to write on here.  I've been thinking about what to say for weeks, and I still don't have the right words.  I've been putting off writing about this, as nothing is yet carved in stone.  But I feel like I have to write, to share with those who have kept me going all these years.

In short, we are looking at Janey leaving the inclusion school she's been part of since she was three, and in fact really before that---as her brothers went there for years before she did.  This is the 13th year I've had a child in her school, and it might be the last.

It took me a long time to accept what others were working on telling me gently---that Janey is not really any longer benefiting much from being in an inclusion classroom.  There are many reasons for this, but the one that hit home, the other day, is that due to her behaviors, she really already isn't being included.  It's not possible.  Janey, more and more, spends the day at school screaming, biting herself, scratching herself, and, more recently----lashing out at others, pulling hair with no notice, even once in a while biting others.  It's not safe for kids to sit next to her, to work with her, although to the eternal credit of the kids, they still want to.  That is the beauty of inclusion---that the kids in her class accept her.  That is what I love.  But in the long run, what is important is what is best for Janey.  Janey can't learn in her current state, not really.  She can't make progress any more in a room that is not modeled for children like  her, children with severe special needs.

The next step is to figure out where Janey should be.  I wrote a few weeks ago about visiting an autism-only classroom, which is where Janey would probably be placed.  There are several groups of these autism strands in the city.  They would provide Janey with a classroom designed especially for children with autism, with schedules with a minimum of surprises, with many, many professionals around that are experts in dealing with autism.  In many ways, it's possible Janey will be able to learn more under those conditions than she does now.  If the autism-only classrooms don't work for Janey, then we will look at other placements.

There are no villains here, no bad guys.  The staff at Janey's school, especially the special-ed classroom teacher this year, love Janey like their own.  I am sure if she does move, I will be far from the only one crying.  But we all have to live in reality.

So why do I feel so sad?  Why have I cried myself to sleep for the last few nights?  Well, because in many ways, this is making me admit something you would have thought I'd have admitted to myself a long time ago.  Janey is more complicated, more involved, than even most kids with autism.  There are many autistic kids at Janey's inclusion school, doing well there.  But Janey's combination of low functioning autism, intellectual disability and behavioral challenges are very hard to find the right way to deal with.  I've been trying, trying with all my heart and soul, for many years now, and there are days I feel I haven't made any progress at all.  Her school has done the same.  And still, Janey screams, she cries, she scratches, she bites, she learns very slowly.  It is not easy to admit to myself that even in at a school where everyone loves and cares for and is trying their best for Janey, she is not able to progress.

But there's the great days.  There's the days I watched Janey running outside with the other kids, keeping up with them, indistinguishable from them.  There are the thousands of times I saw teachers, staff and other kids excited to see Janey, thrilled just to see her smile or laugh.  There's the heartbreakingly beautiful moments she suddenly sings a song, in perfect tune, with all the lyrics, a gift from somewhere deep within her.  There is the love I've felt and I know Janey has felt from a remarkable school community.

I still hold out hope for some kind of miracle, for some sudden, amazing improvement which will allow Janey to stay where she is.  But that is looking less likely. Our IEP meeting is at the end of the month, and that is when we will have to make some decisions.  I will do everything I can to make sure wherever Janey ends up, it's a place where she is cared for and cherished and able to grow.  But I wish, I wish more than anything, that inclusion was working for her.

Thankful

Today is Thanksgiving Day in the US, and I am indeed feeling thankful.  Here's some of the reasons why---

1.  I live in the right time in history.  In the past, Janey would not be able to go to school.  We would have been blamed for her autism, or we would have been told to put her away and forget her.  Or worse.  Nothing is perfect, but I think of all the historical eras I could be living in, I've hit the jackpot with today's world.

2.  I have a wonderful husband.  Tony, I couldn't do it without you.  Literally.  I think I'd be dead by now.  You are there when Janey wakes 10 times a night, when she screams for hours, when she cries for days.  You are there for the good times, too.  You make her bacon whether she eats it or not, just because she likes the process.  You sing with her, recite Three Stooges with her, delight in her good moods.  You are amazing.

3.  By twists of luck too improbable to seem like sheer chance, Janey is attending exactly the school I would have dreampt up for her, had I been dreaming up a school in my head.  The Henderson Inclusion School is something I am extremely, overwhelmingly thankful for.

4.  Janey has two amazing brothers, terrific young men who love their sister, who help me with her, who have fun with her and just treat her like a sister should be treated, with teasing and laughing and fun.

5.  I am so thankful for music, and for Janey's love of it.  The whole day is often filled with song, surprise tracks of pieces she's heard long ago and old favorites mixed together to make a medley I love to hear.

6.  Modern medicine.  I have all the questions and concerns and worries about it that most of you probably share, but when it comes down to it, I wouldn't be here to have those concerns without it.  I'd have died long ago from preeclampsia when pregnant with William.  Tony wouldn't be here without insulin.  Freddy would be here without the magnesium sulfate and skilled care that got him through a potentially deadly asthma attack as he turned eleven.  And Janey, without the medications I love to hate and hate to love, would not be able to be making the strides she is, I do believe.

7.  All of you, and the internet that allows us to connect.  Even twenty years ago, I would be alone in this all, maybe having met one or two other families ever with autistic girls.  Today, I can reach out and talk to many, many people about this tough journey, people that understand and have been there.  That's pretty darn amazing.

8.  And of course, I am thankful for Janey herself.  Janey, you are one terrific girl.  You are beautiful, fascinating, mysterious and so often, a joy.  You have brought me many challenges, but you yourself, you amazing girl, you make it all worth while.  I love you, Janey.

Including those who will never catch up

I got to Janey's school a little early today.  I try to do that now and then, although morning sluggishness and traffic often prevent it, but Janey loves the extra time to run around outside a bit.  Today was beautiful, a lovely fall day.  The morning play area was covered with leaves and sticks and acorns and all the things kids love like that.  Some boys were playing football.  Most everyone had on something Red Sox, in support of the home team playing in the Series tonight.  It was one of those great Boston mornings.  Janey was very happy running around.  Every now and then she'd stop to pick up a leaf, or hold a stick, but mostly she ran, ran among the other kids, never quite interacting but still, I think, very aware of what was around her.

It made me think about inclusion, and how as kids get older, support for it seems to melt away among professionals advising parents.  I've heard quite a few times now from professionals saying that inclusion isn't right for Janey, that she would be better served in a classroom specifically for autistic kids.  I get the feeling that most people think inclusion is fine for little kids, but that when the kids are older, it doesn't benefit either the disabled child or their classmates.

I think this reflects society as a whole.  We embrace, often, disabled children, but disabled teens or adults make us uneasy.  There's probably a couple reasons for that.  One is that we like to think we can "fix" kids.  Sure, let them take a while to catch up.  Let them be around other kids, and have it "cure" them.   In time, they will be just like everyone else!  They just need lots of love and patience!  The other reason is kind of a vicious circle.  Very few "normal" teens or adults spend much time with disabled people their own age, and that leads to fear and maybe even sometimes disgust.  "Look, that big girl can't talk!  She's making strange noises and waving her arms around!  We better steer clear of her!"  We're more tolerant of a range of odd behaviors in the young.

But as I watched Janey today, I thought about how important it is for inclusion to continue to be her life as she gets older, if at all possible.  The reasons for this might be different than when she was younger.  She's not going to catch up.  She is probably understanding less and less of the mainstream curriculum.  She's not going to suddenly be able to make meaningful friendships with the kids in her class.  But in a way, that's all the more reason to have her around them.  I want her to sense the Red Sox excitement, to watch the boys toss a football, to hear the excited chatter of early morning kids.  I want her to have the fullest life she can, and because it's harder for her to access life's everyday joys than most, she needs to be around them MORE, not less.  And it works both ways.  As the kids she goes to school with get older, they are probably noticing her differences a lot more, and working out in their own minds what is going on with her.  By seeing her every day, by being familiar with how she acts and what makes her happy and sad, they are learning that we don't just include people when they are little and cute.  We include them for life, because they are human beings just like us, deserving of a full and interesting and meaningful life.

It seems like there is a point, an invisible line, where many professionals give up.  They seem to say "We gave it a shot.  It didn't work.  She's never going to be part of real life.  It's time to give up on that and find a place for her away from everyone else"  I'm sure they would never consciously say that, but I've sensed a change of attitude from the medical and psychiatric professions.  Not from her school, not from her teachers or administrators  or aides or even the other students, but from the "experts".  Maybe she represents a failure to them, someone that didn't get fixed.  But watching her today, happy among the rest of the kids, content to be living life on her own terms, I think she deserves a chance to be included for life.

True Inclusion

I've read lots of stories about inclusion classrooms that end something like this..."As I left the room, I said to the teacher 'But you told me this was an inclusion class!  I didn't see any kids in there with special needs!' and the teacher smiled and said 'But there were, and I'd challenge you to figure out who they were!'"  The point of the story always is that we have so many preconceptions about children with special needs, but in reality, they are JUST LIKE the rest of kids, and if you just put them in a classroom with typical peers, they will blend totally in!  Well, if you visited Janey's classroom, unless you are unusually clueless, you would not tell that story.  Janey doesn't blend in.  She isn't exactly like all the other kids, unless you are looking at a still photo with one of her smiling face poses.  It would only take a minute or two for anyone to figure out that yes, she's one of the special needs kids.  And that is what I consider true inclusion.

I've been thinking about this a lot the last few days, because of my happiness over how the school year is starting with Janey, and how in general her remarkable school and teachers handle inclusion.  Here's a few examples----

Last night was the curriculum night at school.  I always go to that night, and although I've never felt unwelcome, I've often left feeling sad.  This is not because of anything anyone did wrong, but just because the main line curriculum is not something Janey can access much.  The classes she's in consist of about 25 kids, of which around 4-6 are on IEPs (I don't know the exact number, because that's not my business, and I am sure there are some kids that DO blend in), so most of the class is working at a normal grade level.  I hear about all the reading and math and history and science and testing the year will bring, and I am very happy she's going to a school that teaches at the high level it does, but I am left feeling a little empty---wishing Janey was going to be learning those things too.  When Janey's teacher asked me if I was going last night to the curriculum night, I said "Um, maybe.." which she knew enough to know meant no.  And she said "Please come---we are personalizing the night"  I went, because I was intrigued, and indeed, that is just what they did.  Each parent sat at their child's desk, and each place had a decorative guide to exactly what that child's curriculum was like, personalized.  We all got a chance to read that, and then just to talk to the parents of the kids our kid sits with.  It was wonderful.  I love hearing about the other kids in Janey's class, and I love talking about Janey.  In the background, there was a slide show of pictures from that very day in class, showing what the kids were doing, and I was able to see Janey right there with the rest.   The teachers were available to answer questions, and I left feeling very, very happy.

A piece of inclusion that often gets lost in the shuffle is the regular education kids in the class.  It's very important to me that they also benefit from inclusion, and at Janey's school, I feel they do.  The extra resources that having a lot of kids with special needs around bring in benefits all kids---there are speech therapists, OTs, PTs and lots of other helpers in and out of the class, and also two teachers and an aide, and often a student teacher.  It's no coincidences that for several years in a row, the Henderson School has been the top performing school in Boston on the state testing.  But I think it's more than academic.  The kids learn to accept that there are those among us who need more help, and they learn to give it, and to feel good about themselves for giving it.  There's a new girl in Janey's class who took to her immediately, and who Janey has taken to also.  She is treating Janey like a friend---playing little games with her, chasing her, sneaking up behind her and saying "guess who?"---all that.  For a little bit, I wondered if she somehow hadn't noticed that Janey spoke very little, if she didn't see her autism and intellectual disability.  As if she had read my mind, the girl stopped me as I was leaving Janey in the room the other morning and said seriously "I've only been at this school a little while, but I know how things work.  I have a cousin like Janey"  Somehow, that filled me with an extreme happiness.  She was telling me that she liked Janey WITH Janey's needs---she was aware of them, but Janey didn't need to be "normal" to be worthy of friendship.  That is an attitude her school promotes, and it's a crucial part of true inclusion.

I often wonder how much Janey understands about herself.  Does it matter to her that she be with all kinds of kids, that she do "normal" things?  Would she be just as happy in a separate classroom?  I partly answer that by seeing her after a day of summer school, which is separate.  All reports were she had great teachers this summer, but she didn't have the spark, the joy, that a day at the Henderson gives her.  And last week, I saw how much she does get when she had some homework---very appropriate homework she could do.  When I told her it was time to do homework, and we sat down at a desk to do it, she was thrilled.  She has heard the boys talk about homework a million times, and suddenly---it was her turn!  She did it willingly and to the best of her abilities.  I think being in a classroom with regular routines---saluting the flag, reading groups, recess, homework---all the things we remember from school---is very satisfying to her.

Inclusion is not easy.  This is the 25th year the Henderson School has been inclusive, and I am sure there are still things everyone is learning.  But done right, it doesn't have to be a situation where success means you can't tell who the special needs kids are.  It can be a situation where the very fact that some of the kids have extreme special needs is a boon to everyone.

First Day of Third Grade

The day you think will never actually arrive arrived yesterday---the first day of school.  I always wonder how much Janey realizes what the day is going to bring.  I talked it up for a few days, and she would repeat that it was going to be the first day, but I think she still is always a little surprised when we show up for school.  There's the confusion of summertime school, and there's the confusion of I think her not being totally aware of what tomorrow means, or even today.  Whatever it was, Janey seemed a little stunned to actually be at school at first yesterday.  The first day always features parents and kids gathering at the big inner courtyard her school has.  I figured out it was my 14th first day of school at the Henderson Inclusion School, so I have the routine pretty down!  It's a great feeling, that first day, with excited and nervous kids and parents.  Janey was overwhelmed at first, but then started her running around.  Then she heard the music, being played by part of the arts education team at the school, and she was drawn to it to dance.  I noticed that not another kid in the whole school was over next to the speaker dancing.  Any music at all draws her in, from loud banging stuff to the subtle background music at stores.  The music seemed to settle her down, and she looked happy for the first time in the morning.

And then, her teacher for this year spotted her, Ms. Gailunas, or, as we sometimes call her, Amy.  Amy has known Janey since before she was born.  She is the first person ever I discussed my thoughts with about Janey possibly being autistic.  She is the teacher I credit in a huge way with starting William on the path he is on, turning around his school career and helping him in so many, many ways.  She gave Freddy a delightful 2nd grade year.  And now, she is teaching Janey!  And she is EXCITED to do so.  That's what kept hitting me yesterday.  With how tough the summer was at a lot of points, I'd accept a teacher just doing her job, a school just doing what they are required to do to teach Janey, to have her there so we get a break.  But with the Henderson School, I get so much more.  I get teachers like Amy, excited to see what they can get Janey to do.  I get a whole staff of people that know Janey, many of who knew her from the start of my pregnancy with her, and who love her and are interested in her.  I get school and after school that gives Janey so much more than I could ever give her at home.  I am supremely lucky with her school.

And so Tony and I left without nervousness, knowing Janey was in very good hands.  We went out to lunch, and then we came home and collapsed into a nap.  It was a long summer, and an especially long last few weeks, but as September has always felt to me, the day felt like hope and new beginnings.

A wonderful award

Janey's end of the year awards ceremony was Friday.  For one of the first times since I've been a mother of a child at school, I was a Very Bad Mother and skipped it.  I had what I felt like were reasons.  I spent the morning at Janey's school, not with Janey but with William!  He was asked to give a speech at the 5th grade graduation, as a graduate of the same elementary school Janey goes to (Henderson Inclusion) who is now going to college.  Here's a picture captured from the video of him.

I was so proud of him, and he said being at the school reminded him of what a special place it is.  We saw Janey in the hall, and she responded to seeing William as you would to seeing something that can't really be there---by pretending he wasn't there and hoping the weirdness would go away!  She did give me a hug.  But by the time I got William home, I was tired out of my mind---the pre-lupus or pre-scleroderma or whatever it someday turns into makes me very tired, and I take a nap most afternoons.  And I also just sometimes have a very hard time with events at Janey's school where I see the sharp contrast between her and the other kids around her.  Even though it's an inclusion school, most kids there do not have any disabilities, and the ones that do are mostly all higher functioning than Janey.  I love that for an educational surrounding for her, and so I should not mind it when it's part of a show, but this time, I decided to give in to tiredess and sleep instead.  Tony picked Janey up at the usual after-school time (last day of afternschool, darn it all!  It has been a lifesaver this year!)

But when I saw the award Janey brought home, I wished I had gone to the ceremony.  It was an award for Declamation!  And it was perfect.  It was an award that was REAL---for something Janey really does very well!  They memorized a poem this year, Knoxville (here is it if you are interested), and Janey had it down cold, and could say the whole thing, completely, and with expression.  If there is is one skill Janey truly has, it's declamation!  I knew how much thought had gone into that award, which reflected the thought that Janey's teacher, therapists, aides, support staff---everyone!, gives Janey every day.  There was something about that award, though, that really got me.  I started crying when I saw it, because it was an award for something Janey did well even when putting her up against "regular" kids.  It made me think how Janey really, truly does have strengths, and that her school and her teachers allow them to shine.

I am so proud of all three of my kids.  They all have their own areas to shine.  All three of them have been helped and loved in their own way by the Henderson School, and I want to thank the school and everyone who is part of it.

Janey Awareness, Autism Awareness

Today is International Autism Awareness Day.  I've said in the past I think I'm about as aware of autism as a person can be, but that's not really true.  I am aware of the way autism affects one little girl, and one family.  Autism is a huge spectrum.  There's the saying that has gotten to be a little cliched, but it's true---if you know one kid with autism, you know one kid with autism.  I had been thinking of writing in general about autism and what I'd like the public to be aware of, but I realized I'm not the expert in that.  I'm the expert on only one child with autism.  So here it is, my "Janey Awareness List"

1.  Janey is eight years old.  She's my third child, my first girl, the girl my husband Tony and I longed for.  She was born on her brother Freddy's seventh birthday.  Although she had some quirkiness from birth, she appeared to be basically normally developing until a bit before her third birthday, when she regressed severely.  She was diagnosed at age 3 years, 3 months with autism.

2.  Janey has low functioning autism.  She, like many children with autism, is intellectually disabled.  Although her skills are a little scattered, in general, she functions like a child of about 2.  She speaks, but around 98% of what she says is either simple requests ("I want Kipper, I want green candy, I want snuggle on Mama's bed") or echolalia, delayed or direct (repeated phrases from videos, books, past conversations, etc)  She says very little that is original or communicative beyond requesting.  She knows some letters and some numbers, inconsistently, some shapes, she can sometimes write a J and is working on the rest of her name, she can name single objects she knows when she's in the mood.  Learning this much academically has taken her 6 years of school (preschool through second grade, where she is now)

3.  Our lives are hugely, extremely impacted by Janey.  She literally cannot ever be unsupervised, not for even seconds.  She has the impulsive nature and lack of safety concerns of your typical 2 years old, in a fairly tall 8 year old's body, and she's pretty good with physical things like climbing and opening.  Someone must always be assigned to watching Janey, ALWAYS.  That means even if you have to leave the room for a very short time, like to run to the bathroom or check the mail.  Otherwise, Janey will put herself in dangerous situations or do things like pour liquids on the floor, or worse.

4.  Because of Janey's lack of ability to communicate and her swings in emotion, she can become very, very upset for long periods of time.  We have had stretches of days on end where Janey cried without stopping, all day, crying really being a mild word for what she did---more like screaming hysterically.  There are other days she laughs for hours on end, and wakes manically in the night still laughing.

5.  Janey attends an inclusion school, the William W. Henderson Inclusion School.  She is in a classroom with kids that are typically developing and with a few other kids with various special needs.  There are 2 teachers and an aide in the classroom, and Janey is also supported by a lot of specialists like physical therapists, occupational therapists, speech therapists, music therapists, an ABA specialist---it takes a full staff to education a Janey!  We love Janey's school, and are very lucky she is there.

6.  We don't know what caused Janey's autism, although I have plenty of theories.  I don't really believe in autism cures.  I don't have a fixed autism policy, belief or style.  I believe in doing a hodgepodge of whatever works.  Janey is on no special diets, takes no special vitamins.  I am not saying that those diets or supplements might not work for other kids, but we haven't chosen to go that route.

7.  Janey loves music.  She knows hundreds of songs by heart, and if the spirit moves her, she can sing them in tunes with the full lyrics, but not on command!  Listening to music with Janey is my favorite way to bond with her.  We listen to a huge variety of songs on the iPod in the car, and when Janey likes one, she asks to re-hear it, and I add it to her list, which she knows how to access when I put the iPod on a base at home.  She especially likes country gospel music (although our family is not very religious!), bluegrass, Weird Al, and most of all, Christmas music.  She sometimes is intensely bothered by certain songs, and it could be those are sung out of tune---I'm not really musical enough to know!

8.  One of the hardest parts of autism for me is the stares in public.  If I could make the general, autism-unaware public aware of one thing, it would be how hard the stares are.  If you see a child acting unusually, maybe making odd sounds or jumping up and down or crying when there doesn't seem to be a reason, or just acting much younger than they are, please try hard not to stare!  I never mind people making eye contact with me and smiling, just to let me know they see us and are supportive, but please don't just look at us like we are a sideshow!

9.  If you are interested in helping autistic kids and their families, my personal wish would be that you volunteer or give money or whatever to organizations providing direct support, direct services.  That means people that are working directly with autistic kids---giving the parents a break, giving the children opportunities for recreation, providing afterschool programs, camps, parties, things like that.  Just because an organization has "autism" in its name, that doesn't mean they work directly to help kids with autism who are living here and now.  They might support one very specific type of autism therapy they believe in, or they might give money for research.  I'm not knocking those things, but there are many families out there desperate for help RIGHT NOW.  They already have the kids with autism, and knowing what caused it or working for some long term "cure" is not going to get them through the day.  I speak from experience.  I am very lucky that Janey can attend afterschool and summer school.  I'm not sure how I'd survive otherwise, frankly.  Even with that, vacations and weekends can be brutal.  I'd do anything in the world for Janey, but there are times that her needs overwhelm our family.  I worry about families with single parents, or more than one autistic child, or less school time.  I worry about them very much.

10.  Janey is an amazing person.  I love her very, very much.  That being said, life with autism is tough.  It's tough for her, it's tough for our family.  Those are the two big points I'd like to emphasize in the end, I guess----that children with autism are people, beloved family members, children that are as precious to their families as any child, but that doesn't change the fact that raising an autistic child is extremely, overwhelmingly, unbelievably tough.  Or, to get back to my Janey-centered approach, I love Janey more than I could have ever imagined, and she is tougher than I ever imagined a child could be.

I'll end with a shout out to every family out there raising their own autistic child.  Here's to all of you.  I'm raising a toast in your honor.  Cheers, and my love.

The inclusion school show

Today was a show at Janey's school.  Her school emphasizes the arts, so they have a lot of shows, with lots of dancing and singing.  I love Janey getting to participate in these areas, but I have to admit, the shows are tough for me.  Although Janey can sing and dance, she certainly doesn't, on stage.  I've heard sometimes she does in rehersal, but once she's actually up there, the best I can hope for is her not crying or throwing a fit.  She didn't today---she stood there, with the help of her wonderful aide Ms.. Clemmons, next to her friend Jaden, and although she looked slightly dazed, she was up there with the rest.  Here is a picture of her.  She and Jaden are holding teddy bears.  It's a song where the other kids are doing hand movements, and I liked a lot that Janey had the bear to hold.  It made it a lot less obvious that she wasn't doing the movements along with the rest.  In this picture, it even looks like she's doing a half clap.

There are a lot of amazing kids in her class and school.  Of course, I count Janey as one of them.  But today I was thinking about the other side of inclusion---the kids without disabilities.  I truly feel they too benefit greatly from having Janey, and Jadon, and the other kids with disabilities around them, as much as Janey benefits from being around them, and maybe more.  And if I go to the shows, or to classroom events, and feel depressed Janey isn't doing what they can do, that's missing the point.  I am watching them learn, as I am watching Janey learn.  I want Janey to be in the real world, the world with kids that have all kinds of levels of achievement.  Freddy thrived in that world.  Although we didn't know it, we were preparing him for Janey, but besides that, he met some great kids.  Last night, he talked for a long time on the phone to a former classmate of his, a boy with what I would guess is high-functioning autism.  I said something to Freddy like I was proud he had kept in touch with that friend, and he said "Why wouldn't I?  He's very cool"  When an inclusion school works perfectly, which it doesn't always do, of course, it creates a community of parents that care for not only their own children but the children their kids go to school with.  I want to have a heart that can delight in the accomplishments of all the kids in Janey's class.  I'm not quite there yet.  It's hard.  The pictures below show what I mean, a little.  Janey is there.  She is part of it all, but she also isn't.  She can't be, totally.  I love it that she is included.  It means a huge amount to me.  I love the adults that find ways to include her.  I love it that her classroom teachers, when finding out I was going to the afternoon show and not the morning, knowing that Janey would not tolerate more than one show well in a day, played with her during the morning show instead of having her go on and not be up to the afternoon show.  That is the kind of adjustment, of caring and understanding Janey, that happens all day and allows her to be both herself, a child with low functioning autism, and also part of her class, a class of cool, smart, interesting kids.  And it's why I go to the shows---not so much for Janey, but for her class as a whole, the class she is part of.

The kindness of kids

The other day, someone asked me if Janey gets teased at school.  I was actually surprised at the question---thinking "Of course she doesn't!"  But I realized that back in the day, when I went to school, or at many schools today, I bet she would be.  She cries, she yells, she can't talk much, she waves her arms around strangely, she sings random songs, she wears pullups...plenty of teasing fodder there.  And at some point in her life, she probably will be teased, although thankfully (or not) she won't understand what is happening.  But at her school, the whole culture is one that would abhor teasing.

I saw a beautiful example of inclusion at work this morning.  We got to school a little early, which I love to do now and then, just to get to see Janey with other kids and to have a minute to talk with people.  We were outside, waiting for the bell to ring, and Janey ran away from me a bit.  I went to go get her, but before I did, two of the boys in her class, who were previously heavily involved in a game of tag, ran after her and took her hand and brought her back.  They did it without being asked, without making a big deal of it, without interrupting their game for more than a minute.  They did it because it came naturally to do it.  And it made me almost cry.  They are learning far more at school than academics.  They are learning that we are indeed our brother's (and our sister's) keepers.  They are learning to care for those that can't care for themselves.  They are learning to be good citizens, to be good parents some day, to be just plain good people.

And does all this caring for other come at a cost academically?  No.  In a word, no.  Janey's school, the Henderson Inclusion School, was the top elementary school in Boston last year when judged by test scores. The inclusion HELPS academically.  Part of this is because each classroom has two teachers, and usually an aide or two, which is possible because of the kids with special needs.  The funds that would otherwise pay for separate classrooms or schools for them allow for staff that help ALL the kids.  But I think it's more than that.  I think an atmosphere of love and understanding and caring is one where it's far easier to learn than it is in a atmosphere of competitiveness, self-centeredness and "let's not let the weird special needs kids disrupt our budding geniuses"  type feeling.

I say this not just as a parent of a child with special needs, but a parent of two other children that went to the same school---one with no special needs, one with mild special needs that did not affect his academics.  They are both fine students, and more importantly to me, they both understand that there is more to life than that.

I know inclusion isn't perfect.  I am aware of its limitations.  I know there are cases where it just doesn't work, and I know in some ways Janey might achieve more in a classroom with only other autistic kids.  But I say, only half tongue in cheek, why should I be so selfish as to deny the "normal" kids in her class the chance to get to know her?

First Day of School---2nd grade

It's actually here, that magical first day of school! I can't pretend I'm not thrilled. Partly of course because I get some hours to myself, but also partly because I do love Janey's school so much, and I know she will be happy there. The picture is outside her classroom (her school has a central courtyard) getting ready to go in.

I realized this morning a lack of a feeling I had. I didn't feel one bit nervous or anxious taking Janey to school. I don't think there's ever been a first day of school I didn't have that feeling, and that goes back to my own preschool days. But this is my 13th first day of school taking a child to the Henderson School. It feels very familiar. I've known most of the staff there since they started or my kids started. I can think of only one other parent who has been involved in the school longer than I have currently. For someone like myself, prone to anxiety and a little bit shy with new people, that's a great feeling.

It struck me today what I love most about the school is that it's not just inside the classroom I know Janey will be well taken care of. It's anyplace in the school, from the principal to the secretary to the lunch workers to the teachers in other rooms to the janitor to the older students, and of course in her class too. It's the whole environment. Caring people seem to be drawn to the school, or the school helps people become more caring. I don't know anyplace with a larger ratio of very, very good people---people I literally trust my child's life with.

Janey was eager for school. I think she did get that it was the first day. I spent a lot of yesterday hyping her up---saying "What's tomorrow? Tomorrow is the first day of...." and she would pipe in "SCHOOL!" We had a few tears in the car today, but I think that was more over my music selections than school. We switched to her favorites, and she was happy. Hopefully she is having a good day. But even if it's a tough day, I know she's cared for. Every mother of a child with autism, indeed every mother of ANY child, should be that lucky.