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.

A wonderful day

Once in a while, everything aligns and there comes a day like yesterday, a wonderful day for Janey and for us.

The first special treat of the day was seeing Janey see her brother William.  William is a junior in college, and Tony went to pick him up and bring him home from Christmas while Janey was asleep last night.  First thing in the morning, we took her into his room.  It took her a minute to register she was really seeing him, but once she did, she was thrilled.  She hugged him, over and over and over, backing up after each hug to look at him with a huge smile and total delight.  

Soon, it was time to dress Janey up for the next treat of the day.  A friend very, very kindly gave us tickets to see an autism-friendly performance of The Urban Nutcracker, an updated version of the classic ballet.  I didn't tell Janey about it until it was time to get dressed.  The part she might have been most excited to hear was that my friend Maryellen was going with us---one of her favorite people in the world.  I dressed Janey up in a dress with a sparkly skirt, and tried to manage her hair---it's at a hugely awkward inbetween stage while we wait for it to grow out.  She looked pretty anyway!

Janey was extremely cheerful as we drove to the city and parked to walk to the show.  She seems to love the city, the lights and excitement and bustle.  We need to take her there more.  We got to the show near starting time, and Janey happily sat down to wait.  When the curtain opened, it was to a dancing, stomping, drumming number.  She was overcome!  She almost exploded with happiness and excitement.  She also did something I haven't seen her do out of happiness before---bite her arm.  She didn't bite it hard enough to hurt, but more it seemed almost as a way to keep from screaming with excitement.  I've read recently that sometimes things like arm biting are comforting to kids with autism, and this was one time it seemed that way, a bit.

My happy, sweet girl

Autism friendly performances (at least the two we've been to!) are a great idea.  It's wonderful to be able to relax and know that I don't have to worry about Janey's behavior.  She needs frequent breaks, even when she's watching something she loved, and we got up and took her out several times.  When she came back, she was happy to watch for a while, including at one point for about 20 minutes.  There was a scene with "real" snow" falling on the stage, and Janey said "It's snowing!"  I loved watching her face as she watched the show.

The most special part was during the intermission, when a little boy came up to Janey and said "Hi, Janey!"  It turned out he's in a classroom next to hers at school.  Her reaction was incredible!  She was THRILLED to see him.  They held hands for a long, long time, smiling at each other with huge smiles and laughing.  They even had a little conversation, something that sounded like it was taught by ABA---he said "How are you?" and she said "I am fine!"  Then later he said "What's your name?" although he obviously knew her name!  She didn't answer that, but seemed to love to be asked.  I was in tears watching them interact.  It was by far the most I've ever seen Janey interact with a child her age.  It felt like that rarely seen thing---a Christmas miracle.

After the show, we had a quick meal, along with Maryellen.  The whole time (and indeed the whole day), Janey was happy.  At one point, Maryellen and I said with amazement how we would not have dreamt that a day like this would have been possible a year ago.  

We went after that to pick up Freddy from the bus, also coming home from college.  Janey was very happy to see him too.  On the way home, she said to him "Want to play your game?" by which she meant, we figured out, a game where Freddy chases her and says "I'm gonna get you!"  I was really struck by Janey calling it a game, knowing that it's something associated with Freddy that they do for fun together.  We've never called it a game, and it's cool she understands what that word means enough to use it there.

Freddy, Janey and William

The rest of the day was terrific, too---having all the kids at home, joking around, and Janey in the midst of it, happy and laughing.  It was a day I want to remember always, and reflect back on when days aren't as bright.  It's my Christmas present, one of the best ones I've ever gotten.

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.

Group hug end to a great week

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

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

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

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

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

The week I won't forget

This past week, this past 5 days, really, have been insane.  Insane in that at least six huge happenings have hit me, ranging from very good to very bad.  I hate being vague here, but most of them are outside of the scope of this blog, or not my story to tell, or not something I can share for whatever reason, but it's been all over the map, starting with Janey reading and including hugely unexpected family news, unsettling health news, a great surprise present, others besides Janey needing my help and moral support and more.  It hasn't been a week I'd like to repeat, partly because I like slow and steady.  I don't like surprises or unexpected news, even good news.  I am left tonight feeling a "what next?" feeling, and I hope the answer is "nothing next".

And in writing this, I might have a partial answer to a the WHY of one of the tough parts of the week.  Janey has started being very aggressive at school, lashing out in physical, unacceptable ways.  It's horrifying to me.  It's literally nightmare-inducing, lots of nightmares night after night.  It's possible she is reacting to all the turmoil that I would have liked to think I kept hidden.  Nothing that has happened has resulted in outward scenes at home or a change in her routine, but I have been distracted, overwhelmed---and Janey always know more than I think she knows.  Perhaps she's reacting to that.

Or perhaps not.  Talking it over with Janey's wonderful teacher, we both were frustrated by the lack of a pattern to Janey's outbursts.  Looking at things from a behaviorist point of view, you want to think that if you can understand the reason why, you can avoid that situation, or work on that situation.  But Janey sometimes truly seems to do things out of the blue.  She can be seemingly as calm as can be, when suddenly, WHAM---she's lashing out.  It's scary to see.  It happens at different times of the day, aimed at different people----kids her age, younger, older, adults---it doesn't seem to have a pattern.  It seems to come from within.

I hope, like so many of Janey's moods and stages, this one passes soon.  I hope it isn't replaced with a crying all day stage, or a screaming all day stage, or a lethargic, progress-erasing stage.  I hope a lot of things.  It's one of those nights when I can't keep up the positive attitude I try so hard to keep up.  Autism is tough, folks.  It might not be in vogue right now to admit that, and there are days when it's not as tough as others.  There are days when it's almost the dream you want---an alternative kind of normal, a different but still great trip to Holland.  But today isn't one of those days.  Today it's a scary, unpredictable and tough ride.

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.

Deciphering Janey's Day

One of the most frustrating parts of having a child who is not really usefully verbal is never hearing about what she does when she isn't with me, firsthand anyway.  I adore hearing about my kids' days, but with Janey, the time we aren't together is usually a mystery to me.  I hold onto any tidbit I can get from teachers or paras or therapists, but the parts that are usually the best to hear about are the little incidental things, and it's also always telling what gets chosen to tell me by the boys.  You can guess a lot from what names you hear a lot and what classes are never described.  Janey, though, remains completely silent about her school days almost all the time.

This summer, though, she is saying a bit more on our rides home from summertime school.  It's not telling me about the day, but it's echolalia that I am pretty sure comes from school.  However, out of context, it creates puzzles that are near impossible to to solve, although it's fun to try.  Today, she kept yelling out "Roll the dice!  Okay, TWENTY FIVE CENTS!"  and at one point, "Have you got any chips?"  I'm assuming it was some kind of math game, and not that they were teaching the kids some low-level gambling.  I've also heard a name over and over---Elliott.  I was trying to figure out if he was a character on TV or a video, or a real live person.  That got solved today when I saw a little boy as I went to get Janey, sitting with her class, with an "Elliott" name tag.  That was pretty exciting to me---it was one of the first times I've heard from Janey about a child in her class that was a name I didn't already know.  I've heard quite a few quotes with his name is it..."Elliott!  Don't do that!  That's not funny!" (followed by Janey laughing her head off, as I guess to her it certainly WAS funny) and "Elliott!  Come back over here right now!"  I couldn't resist, as we were walking out, saying to Janey in that tone that comes from who knows where "Is Elliott your BOYFRIEND?"  If I were writing a book of parenting advice, I would certainly say not to tease kids that way, but hey, I'm human.  Janey is the 3rd child out of three I've found myself teasing about the opposite sex.

One of the most wonderful things teachers can do is to tell parents of special needs kids about what their kids do during the day.  I've been pretty lucky that way.  One thing I'm very conscious of at school is not asking for special treatment.  I know in the mornings and afternoons, teachers are getting lots of kids in and out of classrooms, and I try hard not to take up their time then asking questions.  But I hope other parents, and teachers, do understand that what they tell me or what I tell them is often the ONLY way communication goes back and forth, unless it's something written down.  Just a few times, I've gone to school different years and found every other kid wearing some special thing for some special day, or I've found out after the fact that a party date had been changed and Janey hadn't brought what she should have brought for it, or that an afterschool activity had been cancelled.  This happens very rarely, but even the few times felt tough for me.  Probably not for Janey, but when you have a child with special needs, you especially want them to be wearing silly clothes if that is what the day features, or to have a treat to give out if everyone else does, or so on.  Sometimes, a child's special needs creates special needs for the parents, specifically, a special need for communication.  Janey's teachers have used email more over the last few years, and I love that.  It can be read when there is time on both sides, it's there to refer to again if you need to---it's great!

One of my biggest dreams for Janey---that one day she'll actually, directly, tell me something about her day.  She'll say "We had music today" or "I played with my friend at recess".  I would love that so much.  Until then, I'll live for the little scraps she is starting to throw my way!

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.

Janey at School

Here's a picture of Janey at her desk at school!  Yesterday her class had a publishing party.  The class had written stories about a memory that made them happy, and you could go around the room and read the stories.  Janey's teachers had made up a book on the iPad for Janey about how much Janey loves the plants that have been put around the courtyard at the school.  They had great pictures of her, and Janey could turn the pages to show the book to me.

It's always hard going to events at school, as I've written about.  This isn't anything in any way the school does.  Janey is always included.  But it's just hard being faced with the differences between Janey and all the other 2nd graders.  It really hit me yesterday.  Janey is like a toddler in a class full of big kids.  When she saw me, she ran over to me and wanted to be held.  I gave in and did so, because I know she wouldn't have stayed at her desk.  She was in her manic laughing mode, and I was trying to quiet her while the teacher was talking, although I'm sure the kids are very used to her being noisy.  Later I took her for a walk around the school, as she was getting upset.  She very much doesn't like her routine changed, and I am not supposed to be there in the middle of the day.  I mentioned this to her teacher, and I loved how she understood.  She said "but I know you'd feel awful if you didn't come" which is exactly true.  I like it when people get it, and don't try to fix things that can't be fixed.  I have to go---I would never not go to school events.  But it's never going to be easy to do so.

There's great parts about being around the school too, of course.  I get to see as I always do how many people know Janey and are so good to her, and how happy she was walking around the school.  The school is shaped like a bit doughnut with a courtyard in the middle, so it's perfect for talking a walk around when Janey needs that.  She sees people, they say hi and wait for her to answer, which is something terrific for her to work on.  The whole school is part of her education.

And that's the story of my life.  There is always some sad with the happy.  I love the school, I love my Janey, but I'd be lying if I didn't say I sit there seeing the wonderful kids in her class that have written long pieces about interesting memories and I have a deep sadness that Janey can't do that.  I see them sitting at their desks, eager to answer questions, learning so much so easily, it seems, and my heart breaks a little.  I love the Janey I have, but I still have dreams of the Janey I won't ever have.  I wish I could say otherwise, but I can't.

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?

Autism from a kid's eyes

Yesterday after school, a very sweet and cheery little boy that used to be in Janey's class said "Hi, Janey!" when he saw her, as he always does. And Janey, as she nearly always does, completely ignored him. And I, as I almost always do, stopped, said "Janey, can you say hi?" and waited, and then said hi for her. As we walked away, I heard him telling his father "Janey doesn't talk and she doesn't look at you. But you can talk to her and look at her, if you want to". I loved that. It is why I love her inclusion school. No-one most likely has ever sat down with him and taught him about autism and what it means, or told him how he should react to someone who doesn't give you any social feedback, but he knows.